Pediatric Crohn's case

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Crohns dad
New Member


Date Joined Dec 2007
Total Posts : 1
   Posted 12/26/2007 10:37 AM (GMT -7)   
My Daughter 12 was diagnosed with Crohn's in Aug of 2006 . She has been steroid dependent since. she is currently weening off them 5mg evert 2 weeks. She is on remicade infusions every 4 weeks and taking folic acid and zofran.
 
Lately she has started getting hand tremors makes hard to even type and last night she said she felt shaky up to her shoulders. She is getting a remicade infusion tomorrow. Any ideas on the hand tremors this is a new symptom for her. Normaly she just get cramps nausea and migranes have become much more commond. The tremors are new. None so far today which is good.
 
Thanks for any help

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 12/26/2007 11:26 AM (GMT -7)   
Welcome Crohns dad! I am sorry to hear about your daughter's symptoms. I strongly suggest you call your Dr. very soon and tell him/her about the syptoms. I am not a DR. but it doesn't sound like something you want to fool around with. It certainly could be a reaction to medicine. Let us know the outcome!

rlsnights
Regular Member


Date Joined Apr 2006
Total Posts : 449
   Posted 12/27/2007 2:36 AM (GMT -7)   
Hi Crohn's Dad -

You don't say what dose prednisone your daughter started at but the tremors may be due to the prednisone or weaning from the prednisone and she may need to slow down her wean. I agree you should definitely let your gi know about the symptoms in case they are related to some other medication she's on or due to some other health problem. but our gi's behaved as if the many bad effects of prednisone and/or a fast wean didn't exist or were no big deal. I'm not a doctor but your description of your daughter's symptoms sounded a lot like my son's symptoms while on prednisone and trying to wean so I thought I'd share our experience with prednisone weaning in case it is helpful to you.

We ended up consulting a pediatric endocrinologist about this because my son was having terrible migraines, body aches, muscle spasms, restlessness, anxiety, sleeplessness and nausea while on prednisone. These symptoms only worsened while trying to wean. the ped gi just refused to believe it was the prednisone or the weaning schedule. Well, the ped endo grimaced at the rapid weaning schedule the ped gi had us on (10 mg/week to 20 mg then 5 mg/week) and made major changes to it - mostly she slowed it way down and told us to back up a step and go even slower if my son started having breakthrough gi symptoms. She also discussed the signs of adrenal insufficiency that might start showing up once we dropped below 5 mg/day dose and told us to come back for testing for this if my son had morning headaches and nausea.

My son started at 40 mg prednisone. When we talked to the endocrinologist we were stuck at 20 mg because of breakthrough bleeding and gi symptoms plus terrible migraines and body aches at lower doses. The ped gi had my son taking his entire dose at night. The endo had us split the dose between morning and evening (10 mg am and 10 mg pm) and lower the evening dose then the morning dose then the evening dose - back and forth. As I recall we dropped the evening from 10 to 7.5 for a week, then the morning dropped to 7.5 for a week then the evening dropped to 5 then the morning dropped to 5. He had breakthrough symptoms again at 10 mg so we stopped and went back up to 7.5 in the morning and 5 mg evening for 2 weeks. after that we weaned by 1 mg/week until we got to 5.5 mg in the morning and 4 mg evening. At that point the endo had my son only reduce the evening dose by 1 mg/week until the evening dose was gone. Then she told us to wean from there at whatever rate seemed to work but no faster than 1 mg/week and to drop to 0.5 mg/week for the last 2 mg.

This much slower schedule meant it took longer to get off prednisone but many of my son's severe symptoms resolved or became bearable with these changes.

Hope this info was helpful to you. If you don't already know about it, you may want to also visit http://www.dragonpack.com/ibdsupport/parents/ - an online support forum for parents of kids with IBD.

Also, has your daughter had a DEXA scan to check her bone density? If she's been pred dependent for that long she may have dangerously thinned bones and this is something you should have done ASAP. There are at least 3 kids on Dragonpack who have developed spinal fractures due to severe osteoporosis following long periods on prednisone.

Best wishes


Joan123
Regular Member


Date Joined Aug 2006
Total Posts : 191
   Posted 3/17/2008 7:16 AM (GMT -7)   
My son always gets hand tremors while on pred. or while weaning from pred.
Mother of son diagnosed with Crohn's at 12 years old, Oct. '05.  Also has secondary adrenal  insufficiency, IBS, osteoparosis, psuedotumor cerebri and gastroparesis. Meds:Nexium(40mg/2xday); Prednisone(5mg/1Xday); Humira (40 m every week); Dicyclomine  HCL(10mg/2xday);Reglan (10mg/4xday); Celexa (20 mg/day); Diamox (500mg/2xday); Scopalomine Patch (1 every 3 days); Pamidronate (15mg infusion/2 weeks); Growth Hormone (daily injection), Multi-Vitamin w/ Iron;Vitamin D; Tums;Probiotic; Zofran as needed. Hospitalizations:  Oct. '05-Kidney Stone; Nov. '05-Pancreatitis; Aug. '06-C Diff Colitis; Oct. '06-removal of gallbladder; July '07-Gastroparesis; Nov. '07-Crohn's Flare/Gastroparesis and Kidney Stones; January '08-Kidney Stones.


bowlies
Regular Member


Date Joined May 2007
Total Posts : 69
   Posted 3/17/2008 8:43 AM (GMT -7)   
My son also had horrible hand tremors while on Prednisone and even worse as he was weaning off. He is now on Remicade and the tremors are gone. He is 18 and was diagnosed when he was 16. Hope this is helpful.
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