Good news, So so news and Sad news

[araceli]

Good news: My Daughter is doing wonderful.:dance: I don't know if I can say she is in remission. Biological remission?
So so news:We came back from Rheumy in Dallas for son. I did not get a confirmation for his previous AS dx, His Mri and tests don't show any inflammation or damage in his joints. I am very happy about it. The problem is, they don't know what is causing his pain. He will be going to a pain management clinic. Rheumy prescribed Celebrex. I feel that at least we are going in the right track.
Question
What do you think about Celebrex for a kid who has intestinal granulomas. ( I don't have the Crohn's Dx in writing yet)
Sad News: My son's pediatrician died this week. I am very sad.

 

[DustyKat]

Woohoo! Fab news about your daughter! :dusty::dusty::dusty: So happy for you both!

Celebrex - Hmmmm, I am a tad cautious about this med but I don't know what to advise in your son's case. If it were me and an IBD diagnosis may be on the horizon I would likely hold off but that is just my opinion. Okay, so Celebrex is one of the newer class of NSAID's and is said to not have the same gut issue side effects as the old class of NSAID's and therefore I know some GI's do recommend using it with IBD but generally only for short periods of time IIRC. The issue I have with it is I have seen in some patients the same level of gut issues that the old NSAID's are guilty of but again that is just me. I would speak with the GI before commencing it.

Oh my, I am so very sorry to about your son's paediatrician. :ghug: I can well imagine your sadness over this.
If you don't mind me asking, was this expected?

Dusty. xxx

 

[Johnnysmom]

I am so so sorry to hear about your son's pediatrician. I know when you have a child with medical issues the pediatrician is pretty close to being your best friend for a while.

That is a lot of conflicting emotions to digest in one week! Fabulous news for your daughter!!! And wonderful your son isn't having any permanent damage in his joints. My son had knee pain for a while after diagnosis and the ortho ended being the one who was the most helpful.

Celebrex is a NSAID which is a huge no-no for someone who has crohn's. My son took advil before diagnosis and it deteriorated his condition quickly. I would consult the GI on whether he feels it is a good idea for your son to take it.

I am so sorry you are dealing with so much uncertainty right now. I hope you get some answers soon for your boy and that your daughter continues to do well.

 

[araceli]

It really got me by surprise. I called to make an appointment for my son to tell her all about my trip to Childrens Hospital in Dallas, and they told my about her death.I don't know the cause of her death. She was the one who pushed everything for us to be able to go to Dallas, I will be always grateful for all she did and I will miss her.
I don't think celebrex will be good for him. His biopsies came with a lot of issues, only problems he has are constipation and joint pain, no test comes positive for nothing. Sed rate is low. Doctor thinks is early crohn's that is not active yet, so probably that why he does not give the dx in writing. I don't know. I am so confused right know, if I fix his pain with celebrex maybe that will activate the crohn's, If I don't give him that he will be in pain, I need to talk with GI, but I guess I will have to make the decision. Looks like I am not going to be able to sleep tonight.

 

[DustyKat]

That does make it doubly hard then. I am so very sorry araceli. :ghug:

Are you able to reach the GI soon? If so I would hold off commencing the Celebrex but to be honest a couple of tablets are not going to make or break Crohn's.

Have they ever suggested that his pain may be related to his gut?

Dusty. xxx

 

[Maya142]

Araceli - My daughter has AS and Crohn's and in her case her GI said it was ok to use NSAIDs mostly because she is in so much pain that she can't function without them. She's on Remicade and Methotrexate now and we're hoping to get off the NSAID (Mobic for her but she has tried Celebrex, caused nausea) soon. Her AS is much worse than her Crohn's and we can't risk more joint damage so we've had to make some hard decisions about meds.
Her Crohn's symtoms tend to be constipation (and some diarrhea) and abdominal pain. Her ESR and CRP are never high either.
Good luck! I know how hard it is. I can't help but think that her Crohn's was triggered by the use of NSAIDs for 3+ years. But she can't do without them so....

 

[Dexky]

Wow, isn't that the rock and the hard place Maya!!??

 

[my little penguin]

Maya
We had this between Gi and allergy Gi wanted one thing which could give him a bad side effect when mixed with asthma meds . We tried it things did not go well and ultimately had to stop the med .

 

[Johnnysmom]

My son used some patches for a short while that helped with his knee pain. They had the anti-inflammatory medication in them and delivered it right to the joint. His physical therapist suggested them and the Pediatrician had to write the script. I am not sure what type of joint pain your son is having or where, but maybe it's an option?

I am so sorry you find yourself in this place. Our GI did approve 1 advil, once per day for no more than 3 days in a week for my son's knee pain. But unfortunately you need a much higher dose to get the anti-inflammatory effects. I was told 800 mg, which would be 4 advil.

I think once you get the GI's take on this you will be able to make a decision with more confidence. Seems like every decision with crohn's is weighing the good versus the bad. ((((hugs))))

 

[araceli]

That does make it doubly hard then. I am so very sorry araceli. :ghug:

Are you able to reach the GI soon? If so I would hold off commencing the Celebrex but to be honest a couple of tablets are not going to make or break Crohn's.

Have they ever suggested that his pain may be related to his gut?

Dusty. xxx

I will try to see him next week. Rheumy told us it may take a couple of months before celebrex kicks in, so I am going to wait until I talk to GI. Any way insurance did not approve med so I have to wait until they talk to Doctor.
GI and Rheumy thinks the pain is IBD related and that Crohn's will be active sooner or later.

 

[araceli]

His pain is in the coccyx area, lower back, upper back and neck. Lately he is having pain in his wrists. I am locking forward to go to the pain management clinic, He will be evaluated by a Pain Dr, Physical therapist and a psychologist, and the three of them will decided what approach to take. I think it will be very beneficial for him. He uses patches, cold and heat and I will take him swimming, I heard water makes wonders. THANKS EVERYBODY.

 

[Maya142]

My daughter started out with pain in her knee and lower back, but now most of her joints are affected. For her any movement helps. She loves to swim but if she's too tired even going for a walk will help. She has a lot of trouble sitting through classes in school and sometimes comes home if she's in too much pain. Her pain and stiffness is also worst in the morning.
If your son has pain/stiffness in the morning that gets worse when he isn't active, I would continue seeing the rheumatologist. Even though he might not have inflammation on his MRI now, he may later. Has he been on prednisone at all? If prednisone helps then chances are it is some sort of inflammatory arthritis. Prednisone could also be the reason inflammation isn't showing up on his MRI, if he had the MRI after being on pred. There is a lot of good information about AS on the Spondylitis Association of America website.

 

[my little penguin]

WE were told the same thing for DS to keep him moving as much as possible and swim/water therapy- right now they believe his stiffness/pain is crohn's related.

hope he gets some relief soon.

 

[Twiggy930]

So sorry to hear about your son's doctor. I know how attached we parents can get to the good ones.

My son's GI has given the ok to NSAIDs if my son needs them for his joint issues. Granted this advice was given with the assumption that the NSAID wouldn't be taken for extended periods of time, more like the odd occasion when his joint issues were bad. I have given him ibuprofen at times for this reason. I try to avoid it though because I'm paranoid. :ybatty: Rheumatology has always avoided the NSAIDs because of my son's Crohn's diagnosis.

It is frustrating to not get a firm explanation for the cause of your son's back pain. My son's ankle issue has resolved, thanks to prednisone (still on 2.5mg a day), but he often talks of back pain. From everything I've read about AS it can take a LONG time to diagnose it.

Great news about your daughter!

 

[Twiggy930]

FWIW

Sulfasalazine seems to keep my son's enthesitis at bay and also seems to keep his abdo pain at bay too. Might be worth looking into.

 

[araceli]

My daughter started out with pain in her knee and lower back, but now most of her joints are affected. For her any movement helps. She loves to swim but if she's too tired even going for a walk will help. She has a lot of trouble sitting through classes in school and sometimes comes home if she's in too much pain. Her pain and stiffness is also worst in the morning.
If your son has pain/stiffness in the morning that gets worse when he isn't active, I would continue seeing the rheumatologist. Even though he might not have inflammation on his MRI now, he may later. Has he been on prednisone at all? If prednisone helps then chances are it is some sort of inflammatory arthritis. Prednisone could also be the reason inflammation isn't showing up on his MRI, if he had the MRI after being on pred. There is a lot of good information about AS on the Spondylitis Association of America website.

Hi Maya. My son also has trouble sitting through classes. his pain and siffness is also worst in the morning and gets worse if inactive, presnisone did help. He was without pred. 2 weeks before MRI. Rheumatologist will see him every 6 weeks if nothing changes. Thank you very much for the information and I hope your daughter gets better.

 

[araceli]

FWIW

Sulfasalazine seems to keep my son's enthesitis at bay and also seems to keep his abdo pain at bay too. Might be worth looking into.

He already tried sulfasalazine, did not work. sulfa is great for joint pain but for some reason it does not work good for back pain. yes it takes years to diagnose, unfortunately. I am so glad your son is doing much better.