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Pill cam was done.

Pill cam for my son was done 6 days ago with no problem. I am very proud of him, he got it in fast with no fuss. It was out the following day. I saw it and retrieve it because he wanted to keep it. Don't ask me how please. :stinks: We are waiting for result but I don't expect any answers. Maybe because I don't want to hear he also has Crohn's or because sometimes I think we are looking on the wrong place. Meantime he is eating like a normal teenager and still losing weight. Meds for pain do wonders but as soon as I try to take one of them away pain comes back. His neurologist ask me why I want to take the pills away if they are working but I feel we are just masking the pain without knowing what is causing it. I am glad he is living without pain but also worried about the damage they will cause in the long run. Love/hate relationship.
 
My kid is getting the pill can soon. We are awaiting next step instructions for it as the doctor 'prescribed'it right before labor day I assume it will take a bit to get it all started. Did you do it at the clinic/hospital? Do you get to leave with it or do you have to stay there for 8 hrs? How long until you get results? Hoping for positive news for you! What pills is he taking?
 
I hope you find some answers with the pillcam. I do understand about pain meds masking the issue not treating it. Sending hugs your way!
 
SupportiveMom. It was done at the Hospital in the colo/endo department. In case he did not swallowed it they were ready to put it in by endoscopy under anesthesia. He was provided by a belt with sensors and a recorder and was send away. He went to school. You have to go back in 8 hours and return the device. Doctor told me not to give him anything to drink or eat for only 10 hour prior to procedure. I gave him some magnesium citrate the prior afternoon to clean him since he gets constipated. I did not wanted to risk an unclear image. It is very important to check that the pill gets out, if not, an x ray is necessary before any MRi can be done. He did not feel it going out and it was hiding in the poo. LOL I expect result in one week. He is taking celebrex and antiseizure meds that help with pain. Good luck with your kid's pill cam.
 

Tesscorm

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Glad it went well and hope you get some answers. :ghug:

And totally agree with you wanting answers, not just a med to mask the pain.
 

Maya142

Moderator
Staff member
Great that it went well! That's hilarious that he wanted to keep it! M didn't see hers in the toilet (I guess she missed it) and was so disappointed.
I hope you get the answers you need!
 

my little penguin

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Staff member
Hope you get answers soon just went through crazy go stuff with oldest kiddo thankfully scope showed no crohn's but did show severe lactose intolerance which was causing pain/Ibs symtpoms - not something we would have found without the scope since it wasn't on the radar.

But know and fixing the problem is better than covering the symptoms and hoping it will go away.
 

Maya142

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I think it was an endoscopy - my daughter's GI did the same test when she had her first set of scopes. It measures the lactase enzyme I think. That's when we found out that M was lactose intolerant, which we had never suspected since she drank (and tolerated milk) quite regularly.
 

my little penguin

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Staff member
Sorry --not a pill cam
It was a test on the biopsy samples of an upper endoscopy .
But the abnormal looking mucus on the duodenum have us a clue.

Just meant the gi was looking for another cause but found the real cause because we tested if that makes sense.
 
At least I am going to know if celebrex is causing damage. QUESTION.... Do you think the GI will do the test only if he/she finds a clue or suspects of lactose intolerance or they will do it just to get it out of the way? What I am trying to say is from the hundreds of tests my son has been thru I am sure lactose intolerance test is not one of them.
 

my little penguin

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Not sure - I plan to ask the GI at our follow about whether DS was tested -- and the doc had tested my other kiddo on the first scope -2 years ago .
I know they also looked at celiac and a two other things with this test.
 
Pill Cam result are clean. That means he is not going to have an official Crohn's DX but his Doctor would not say he does not has it. I am back to the same. On the bright side celebrex is not causing any damage, as per pill cam results. We are trying to taper on gabapentin and see what happens. I really want him out of those meds but he is doing so good, I am CONFUSED.
 

my little penguin

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Staff member
Did they dx him with Juvenile Spondylarthritis ?
Celebrex is not just for pain .
It is aslo used to reduce inflammation in the joints of JSpA .
It is one of the drugs that is in our list to add if DS's joints don't improve soon .
So for that drug you wouldn't be covering up the pain but reducing inflammation.

Most adults with SpA are found to have sub clinical gut inflammation or full out crohn's .
The two go hand in hand - it just takes some longer to develop one side versus the other .

Is he still seeing Rheumo ? Did they MRI the pelvis /hips?

I wish there was an easier answer
DS had joints pains labeled as arthralgia for over two years before inflammation could be felt /seen in his joints .
Which meant two plus years of seeing the Rheumo but at least that made his JSpA dx faster.

Is he doing range of motion exercises daily ?
Strengthening exercises like swimming etc....
Weight loss can occur from the inflammation in the joints as well as the gut .
Hope they figure it out soon
 

Maya142

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Staff member
They need to do a very specific type of MRI to detect inflammation - STIR or with contrast.
Even if he doesn't have visible inflammation on the MRI, that doesn't mean he doesn't have JSpA. Sometimes it just takes a while to show up.
Does he have normal mobility in his lower back (lumbar spine) and hips?

I agree that it's VERY important to have a pediatric rheumatologist follow him - given his symptoms and his sister's history, JSpA is a definite possibility.
Good luck!
 
He has been Unofficially Dx with spondylitis, sacrolitis, JSpA, JA, early Crohn's, arthralgias etc. Mri with/without contrast was done, X rays, bone scan, hbl27, labs, pill cam, etc. At the beginning of testing for Crohn's he had granulomas that were consistent with Intestinal TB and or Yersinia, more tests on those were negative. Joints don't show inflammation neither Sed or Crp. He is very Vit. D deficient and now on 10000 uil. Celebrex took away his coccyx pain and stiff neck but did nothing for back and wrists pain, that is the reason he is on gabapentin and elavil. Even his right quadrant pain is almost non-existent. He is still under the care of a pedi-rheumy. His GI thinks he is going to develop crohn's sooner or later. He is able to do exercise now. He has very flexible joints. He is doing great on the meds he is on right now. One of the reasons I want him to stop taking them is because next time we go to the rheumy all the test will be fine. No pain, no inflammation, maybe the Dr will not even consider ordering tests. On the other hand I feel guilty taking him out of the meds and putting him thru pain again just because I want a DX. I don't know if I make sense to you. Sorry. English is not my main language and sometimes I write to much and say nothing.
 

Maya142

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Staff member
If he is already diagnosed with JSpA or juvenile arthritis, why take away his medications? Gabapentin and Elavil will not have any effect on inflammation, but will help with pain for some people. Taking away Gabapentin will not make inflammation or damage show up on an MRI -- that just takes time (and ideally, you would want to prevent damage).

Taking away Celebrex may make inflammation come back, if it has gone away but I would not do that without asking his doctor first.
 
Thanks Maya. It makes sense now. About the DX I did not make my self clear. He was Dx and then UN DX. I already talked to both Doctors about the medicines.
 

Maya142

Moderator
Staff member
Why was he undiagnosed? Given the family history and his symptoms, I think he could meet the criteria for JSpA even without a positive MRI.

My older daughter's first MRI (of her pelvis) did not show inflammation. Her second one, about a year later, showed inflammation and erosions. She was diagnosed based on her symptoms (lower back pain and morning stiffness, knee pain and ankle pain), clinical signs (visible inflammation in ankle and knees, SI joints painful when pressed) and her family history (my husband has AS).
 
Withdrawing medication in order to obtain a diagnosis is a difficult decision to make. I agonized over it for months, but in the end it seemed like what we needed to do. I'm so thankful that we did because now we have answers and an effective treatment. I wish the best for your son and I hope you have peace with whatever decision you make. Keep us posted!
 
Oh, how I feel for you. :(
I've been down this path and still get back on it every once in awhile.:wink:

We had to take my dd off the meds also. It was tough but I needed it to show up in scopes. her doctors were all aware of what was happening.:wink:

Can you call his Rheumy and ask their opinion?
 
Maya. I have learn a lot from your posts. I believe the reason for the UnDx is because they are not sure which one is the DX. Now they put on paper things like, arthralgias, limb pain, muscle pain. Seems to me that everybody is waiting for the gastro to finally say is Crohn's. Sometimes I think is like what was first? the egg or the chicken.?
Dancemom. I have been following your treads and I know how hard has been for you to get a Dx. I am glad you finally know. Farmwife. I also follow you a lot. I did ask his rheumy and his neurologist, and both agree on tampering of meds but they gave us the option to go back on the dose if needed. Unfortunately we don't have a pedi rheumy in town so we have to go to Dallas which is ten hour drive.
Mlp. Thanks for the article and all the info the you take the time to post. I really appreciated. I am very please with the Doctors and I know they are doing everything for my son. I was reluctant to go to the neurologist because I saw no point in it and he was the one who made it possible for my son to be pain free. I will let you know how it goes. THANKS ALL.
 

Maya142

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Staff member
I can't even imagine how frustrating it must be to have to watch him suffer. I hope they can help him soon.

I was just reading an earlier post - and CRP and ESR are often not raised in kids with JSpA. Even in adults, it's only something like 60% have raised inflammatory markers. There's a book called "It's Not Just Growing Pains" by Dr Thomas Lehman. It's was written in 2004 and so is a little bit dated, especially regarding the treatments (biologics were not as widely used then) but has a lot of good information.
 
Aracelli,
Sorry to hear the pill cam gave no more answers though in a way I guess it is good that at least he still does not seem to have full blown Crohn's disease. I have to agree that it is a tough choice to make about the meds. No advice at the moment just sending you a big hug!
 
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