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Crohn's Disease Forum » Parents of Kids with IBD » Ant's pains - it hurts when he breathes


12-13-2010, 10:08 PM   #1
AntsMommy
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Ant's pains - it hurts when he breathes

Since coming off the pred (8 days now), Anthony's pain is worse. He has no energy and lots of joint pain. The last few days have been really bad - lots of 'stinging pain' in the lower right side (where his stricture is).

He is walking hunched over, and now his back hurts. On top of this, if he breathes deeply (or even moderately), his chest and back hurts then as well.

I called his Ped GI 3 #$$!#([email protected] times today (sorry, really frustrated!) and left messages - NO call back. I know that the prednisone has bad long term side effects, but at this point I'd like him to be able to take it just to get through until we have an answer on how to proceed.

Next Monday, I have an appt. with the pediatric surgeon
Next Tuesday, I have an appt. at Mt. Sinai Children's Center (yay!) so I am really trying to get through the next week so he can be seen there.

Is his overall pain common? Is this related to the prednisone? It seems to happen when he is weaned off of it.

At this point, if I cannot get a hold of the GI tomorrow, I am going to ask his pediatrician to give me a prescription for it. I don't know if this is good or bad, but I can't stand seeing him like this and I can't watch him suffer another week. Even then, it isn't likely I will have an answer on Tuesday.

What would you do??
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Kelly

Mom to 16 year old son with Crohn's Disease
Diagnosed September 2010
Phlegmon 1/2011
6MP - started 12/22, increased to 50 mg
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1/31 - ileocolic and small bowel resection, 2 strictures removed
12-13-2010, 10:26 PM   #2
crazycanuck
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Call your closest major hospital and ask to speak with the gastro doctor on call immediately. Tell them your concerns. They should always have somebody on call and he should no be having problems walking or breathing. It very well could be weaning on the steroid to quickly or the fact he is very sick and needs some medication to help him out. Either way I would definately call.
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12-14-2010, 06:35 AM   #3
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Kelly, sorry I missed this!! I hope you've got to talk to someone by now. If so, what did they say? If not, maybe you should take him to the ER.
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12-14-2010, 08:11 AM   #4
DustyKat
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Where in his back is his pain?

If it were me and I couldn't get to see his GI right now I would be at the hospital. He needs to be reviewed and at the very least have some sort of pain management.


Thinking of you,
Dusty.
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12-14-2010, 08:44 AM   #5
Nica
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It is possible the back pain is like mine, related to crohn's. If it is in his ribs and he is having problems breathing he needs to see a Rhuematologist asap. There is a possibility of a rather icky bone disease called AS that can come with crohn's.

Take him to the ER please.
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12-14-2010, 10:22 AM   #6
AntsMommy
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Thanks everyone,

He is feeling a little better this morning, but still has back pain. I have left ANOTHER message with his ped GI as well as another GI who is nearby (the Ped GI is 1.25 hr away).

This one is an adult doctor, but saw him in the hospital when he was hospitalized for his blockage so I thought maybe he could help temporarily until I get to Mt. Sinai, or can refer me to someone to get some help. Otherwise, I have an appt with his pediatrician after work, though I am not sure what that will do but maybe they can help somehow.

If not, maybe I will go to the ER.
I will update you as soon as I hear from someone!
12-14-2010, 04:07 PM   #7
AntsMommy
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Okay, update:

Anthony is actually feeling a little better this afternoon.

Adult GI who saw Ant in the hospital called and referred me to the one ped GI that he knows - the one we currently see.

Finally heard back from Ped GI Specialist. She said that biopsies came back normal and given the severity of his stricture, she discussed options with the surgeon and they really feel that surgery is the only way to go right now. She is calling in prednisone for him in the meantime. (She also said she tried calling me all day yesterday and kept getting a message that my voicemail was full - and then I got a message from her secretary that she gave her the wrong number!)

I meet with surgeon next Monday to get details. I don't even know if this is going to be a resection or strictureplasty. Does anyone know what recovery times for these would be?

Does anyone know - what does it mean when a Crohn's patient has a biopsy that comes back normal? Is it just that the disease has not affected the areas they biopsied?

I also have the Mt. Sinai appt. on Tuesday (which she doesn't know, but I want to see what they think).

THANK YOU GUYS so much! I think you guys are keeping me sane!! :-)
12-14-2010, 04:18 PM   #8
crazycanuck
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Im not sure on recovery times but I believe your right the biospies can be tricky becaise they may just miss the affected tissue and therefore appears normal. They try to take multiples but it is possible I believe.
12-14-2010, 05:16 PM   #9
Nica
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I thought the biopsy was just for cancer and polyps? Am I wrong? I have never had any type of diagnosis or anything come back from a biopsy. Ok I had a misdiagnosis once another gi told me that nothing would be in a biopsy that would dx Crohns or UC.
12-14-2010, 06:45 PM   #10
crazycanuck
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Just double checked and biopsies can confirm crohns (along with other things).
12-14-2010, 07:25 PM   #11
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Hrm hehe I don't know as long as they don't come back with something terrible it's all good.. but it makes me wonder if I actually have UC now considering that was my first DX. Eh I suppose it really does not matter!
12-14-2010, 09:03 PM   #12
AntsMommy
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I believe that is the case, Nica - they were looking for other bad things. She couldn't get into the stricture area in the terminal ileum, either.

I am going to be incredibly naive right now and allow myself to think that perhaps we will remove this section and he will be fine, live happily ever after. For tonight, at least.

:-)
12-15-2010, 01:53 AM   #13
DustyKat
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Does anyone know - what does it mean when a Crohn's patient has a biopsy that comes back normal? Is it just that the disease has not affected the areas they biopsied?
Were the biopsies done after treatment with Prednisone? If so it just may mean that the affected area has healed and along with the evidence needed to diagnose the CD. I think one of the indicators they look for is granulomas and if these are not present they make a judgement based on how the tissue looks (this is just my interpretation). Matt's biopsies didn't show granulomas but they made the diagnosis based on other factors. There could also be the possibilty of taking a biopsy in a skip area. At the end of the day, and from a hard learnt lesson, I think it is just as important, if not more so, to follow the symptoms as much as the test results. If the test results are normal but your body, or your childs, doesn't match it then trust your body.

I meet with surgeon next Monday to get details. I don't even know if this is going to be a resection or strictureplasty. Does anyone know what recovery times for these would be?
Roo had an emergency open resection, large amount of bowel removed, and even though she was in extremely poor condition going in her post op period was uneventful. She was discharged day 6 post op and back at school after 2 weeks at home. I would imagine going in under controlled conditions and with the possibilty of not being an open resection, if a resection at all, would lead to shorter recovery times. Roo has been in complete remission since her surgery 4 & 1/2 years ago.

Good luck with your appointment!

HTH,
Dusty

Last edited by DustyKat; 12-15-2010 at 04:14 AM.
12-15-2010, 04:07 AM   #14
crazycanuck
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Hey dusty thats great news about roo must give your son some hope seeing his sister in full remission for that long.
12-16-2010, 11:43 PM   #15
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Thank you so much for the info, dusty! Ditto what CC said!

He was on prednisone shortly before the colonoscopy, but the two rounds of pred haven't changed the stricture that he has. I guess the way I am understanding it is that the disease is isolated in the section where the 6 cm stricture is, and she couldn't get into that area?

He is doing so much better today, back on the pred temporarily. It is a shame that it has so many side effects and is so bad for you. :-( He still has some symptoms, but is able to function. He even played table tennis in gym today!

On a side note: I spoke to his guidance counselor and she informed his teachers so they could be prepared if they had to send him home work for recovery after surgery (if he has it), and she moved his locker! He was lugging around this HUGE heavy bag because it was previously in a wing that he had no classes in so he never had time to get to it. Small victories, I guess.

:-)
12-17-2010, 04:05 PM   #16
AZMOM
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Well it sounds like you are getting to take a breath, even a short one counts. :-) We'll be thinking of you all in the coming days...keep us posted!

Julie (Claire's Mom)
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12-17-2010, 11:04 PM   #17
susanfrances
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Kelly,
The school should be providing much more for your son other than being willing to gather his assignments and move his locker. A 504 plan can provide many accommodations to make school more productive and less stressful. As part of that 504, your son's teachers would have to be familiar with his condition and how it might affect school performance. My daughter was having very embarassing episodes in the restroom (4th grade)- The office staff was kind enough to offer her the use of a private restroom off of the main office. Little things like that help a lot.
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12-18-2010, 05:02 AM   #18
rosie55
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Hi Kelly

I do feel for you, its so awful to watch your children in pain and feel so helpless. It seems like a living hell sometimes especially when you cant get the immediate help from the clinicians. Then you dont know what to do for the best. I go into panic mode. I am glad to hear your son is feeling better now. Its important for you to have some time for yourself while he is able to manage. I hope you are getting out and having some normality. Go and see a movie, go out for a meal or a nice walk on your own or with a friend or partner. You need to recharge batteries and energy levels because it takes so much out of you when you are dealing with a bad episode.
12-20-2010, 10:36 AM   #19
AntsMommy
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Thank you Susan. What is a 504? I did receive a paper at home for the surgeon or doctor to complete in order for the school to organize some tutoring. I will take a closer look at it. So far, this past week is the most help the school has been. First quarter, his gym teacher gave him a 73 because he wasn't staying after school to make up missed gym classes when he has a NOTE saying he cannot play! I was (am) furious about that one!

Rosie, thank you so much. You are right about recharging. This weekend I was able to get some more shopping done and went for a nice dinner. :-)

Today, Ant is home from school again. Has anyone ever heard of back pain due to this? The problem is that he is in constant pain from the stricture, so he walks hunched over, which is causing major back pain.

Off to see the surgeon in a few!

Mt. Sinai appt. is tomorrow!! :-)

Kelly
12-20-2010, 02:40 PM   #20
AZMOM
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Kelly - This will tell you more about a 504 http://www.ccfa.org/kidsteens/?LMI=8 as you know I'm a fan of 504s. :-)

Julie (Claire's Mom)
12-20-2010, 02:49 PM   #21
AntsMommy
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Thank you Julie!

WOW, that is thorough! And here I was thinking I did a great thing by having his locker moved! :-D

Question - the plan coordinator - is that someone I choose or the school appoints?

Will the school be familiar with this when I bring it to them?

Thank you!!!!!!!
12-20-2010, 02:55 PM   #22
AZMOM
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You are funny. :-) Yes, the school will have a coordinator. For Claire's school, my meeting was with her teacher, the school psychologist and the 504 coordinator. They will know what you are talking about when you tell them you need one.

You DO NOT have to do a 504 as big as the one CCFA has posted. You will be reviewing it annually with his school or more often if there are changes to his condition. For us, Claire's only consists of more excused absences for physician office visits, labs, etc; extra bathroom breaks; a change of clothes at school (kept by her teacher since she's too little for a locker :-)) and also due to her arthritis, she can choose to self-limit in PE and they will provide an alternate activity. Ironically the only thing she has needed this year is the bathroom breaks. Everything else has been going well.

Just think about what he could need if he is there and not feeling 100% and that will get you started. They may ask for a statement from the physician. In AZ, the school gave me a page for him to fill out and then we added to it. In KY, they just took her old one from AZ and we modified from there.

I hope I'm not overloading you with info!!!

Claire's Mom
12-20-2010, 09:55 PM   #23
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Hey Julie, how about starting a Wiki on 504 plans? I'd do it but I'm terribly lazy!!
12-21-2010, 08:41 AM   #24
AZMOM
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I'd love to but I'm embarassed to say I know nothing about starting wikis! Point me in a direction to figure out what the heck I'm doing and I'd be happy to try! :-)

Julie (Claire's Mom)
12-21-2010, 08:03 PM   #25
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Just click the Forum Wiki at the top of the page and start a new thread. All you have to do is provide the general info about the subject. When Rebecca sees it, she usually organizes them and we all look like geniuses. I have no clue how she does it!!
12-23-2010, 07:37 PM   #26
DustyKat
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There is already a topic about going to school with Crohns so just add any info you want.....

http://www.crohnsforum.com/wiki/Goin...Crohns-Disease

Dusty.
12-24-2010, 06:10 AM   #27
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See Julie, I'm even too lazy to know that ^^^^^!! Good to see you Dusty!! I was having to resort to your old responses so I'd have something to say!!
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