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Update

Hello. I have been away from the forum due to a family member illness, I spend most of the time across the border and get home really late.
My Daughter is doing very good, still on remicade 10mg/Kilo every 8 weeks, other than a stomach virus few weeks ago, no other issues. I know it will sound kind of weird but she is trying to loose weight with no luck. (She is overweight. ) Doing great at College and will start her first job as a Teacher assistant next week. She will be 19 next week, time to leave her Pedi GI. Don't want to.
Son doing very good thanks to a bunch of pills. ( I should not complain about it). Have an appointment with endo in 2 months, He weights less than 2 years ago and has not growth that much. My concern is that he eats like crazy, does not exercise much and at almost 17, at 5.4, he is 5 inches shorter than his brother and 6 inches than father. Go figure. Overall. things are good here.
 

DustyKat

Super Moderator
Thanks for the update araceli. :)

So fab to hear that your daughter is doing well on Remicade. Also brilliant to read that she is doing well at college and is about to start her first job! :dusty:
Do you have an adult GI lined up?

And so happy to read about your son too! :):):)
Do the docs have any answers to his weight and height issues?

I hope things will be okay with your family member hun. Sending hugs and healing thoughts your way. :ghug:

Dusty. xxx
 
Thanks Ladies. We will see an endocrinologist in October, bone x ray was ordered and looks good, it does not say if his wrist plate is already close or he can grow more. I don't mind and neither does him about his height, but since he was the longest (don't remember length) and heaviest at 9lb and 10 oz, I expected him to be taller. According to all the test he had, there is no reason for him not to grow or gain weight, one thing is in back of my mind, Thyroid problem. It runs in both families. so I will ask for more tests. My daughter stopped growing when she got sick and I never did anything about it, I did not know at that time what to do. Now I just want to make sure my son is getting all the nutrients he needs. I think we already have an Adult GI in mind, her pedi GI has been trying to kick us out since last year but we are playing dumb, deaf and whatever it takes not to leave. Hopefully she can be allowed to get infusions at pediatric clinic even when we change GI. Adult oncology is kind of depressing and we are so used to the pedi nurses already. My baby is 19 years old today and I still want her with pediatrician. LOL Shame on me.
 

crohnsinct

Well-known member
No shame there! Our ped GI will see the girls until they are 21 or are kicked off our insurance and I fully plan to stick with him until then!

You mention your son is doing well thanks to a lot of pills...do you mind me asking what he is on and for what? Just wondering if IBS drugs and if so I would still be a tad suspect.

I understand your concern re: growth. My youngest had precocious puberty and grew a lot and very early. It masked her Crohn's so a delayed dx left us behind the eight ball with regard to growth. I am afraid all her plates closed while we were being put off on dx. Not such a huge issue for girls though.
 
The pills are Gabapentin, Elavil and celebrex, all for pain. He started having pain in his coccyx then back, followed by belly pain and lower right quadrant, then joints all over. All test have been done, first colo/endo biopsies came with multiple ephitheliod granulomas and other stuff consistent with Yersinia or TB. Both test were done numerous times after and came negatives. second colonoscopy was clean, Mri showed Nonspecific mucosal fold thickening and hyperenhancement involving the proximal to mild jejunal loops. The most recent was Pill cam and came clean. All other test are normal other than Very low levels of Vit-D. GI says..We are on stand by. Rheumy DX is amplified musculoskeletal pain diffuse which is an umbrella for a lot of things, one of them being Fibromyagia. We have been with all kinds of Specialist even a pain Doc and psychologist. Finally a combination of the above meds from Rheumy and Neurologist did the trick. He has his bad days but mostly there are good, He got his life back and I got back my crazy and happy boy. His tummy pain is also gone. At least most of the time. I am not ok with the Dx or no Dx, but I know all the tests that he could have he already did. But I am happy that after two years in pain, he is no longer suffering thanks to a bunch of pills. I guess we are on Stand by.
 

crohnsinct

Well-known member
Goodness! That IS a lot! How do you keep it all straight? As much as I hated the fact that T got the Crohn's dx, I was glad we had some definitive answers.

You are such a good mom for keeping on top of all of this! Prayers for strength!
 
Yes they did. First one, the one that started our ordeal was interpreted as follow, MRI findings of an early erosive sacroilititis, findings are very concerning for an early spondyloarthropathy, include ankylosing jir. bla bla bla. From that Mri hell broke loose, After changing DRs. a lot of medicines, 3 other MRI's the re-reading of first Mri by 3 different experts, We came to the conclusion that first reading was WRONG. I Don't really know what happened, the person who read it was really dumb or he read somebody else Mri. He is been seen by a Pedi- rheumy in Dallas and all tests are done over there at the Hospital, I am confident that over there things are done right.
Poor kid, from bad readings of Mri's, sending of prometheus test to wrong lab, Mri's on the wrong places of the body, incomplete tests, you name it. Everything that could get wrong with him and tests, went wrong. Even Insurance put my Daughter's medical records on him and Vice-versa. Somebody is doing vodoo on me. My daughter just stepped on some nails. I need a bottle of wine.
 
Yes Catherine. He had lower levels (17) than my Daughter. He has been on 1000 uils with no difference, then 5000 uils with little improvement, last one was 10,000 daily for 6 months and his levels went over the maximum levels recommended, so for now he stopped taking it. Next test in a couple of months and we will go from there.
 
Wow Aracelli,
That is crazy. For fibromyalgia I take Low a Dose Naltrexone and it makes a huge difference, have you looked into it for him?
 
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