Need help for 6 year old daughter

[[email protected]]

My daughter, Madeline, is 6 years old and was diagnosed with Chrons Disease in January. She also has celiac disease and seizure disorder.

On Jan 15th, she started taking 50 mg or predisone and 25 mg of Imuran. She is being weaned off the predisone right now and is down to 10 mg/day and then every other day starting on Monday.

Since Wednesday, she has been throwing up about one hour after taking the Imuran. You can see it in her face that she is not feeling well, sick to her stomach and nasuea. I have not been able to get in touch with her peds GI doctor. I am just wondering why it just started happening if she has been on it for 6 weeks. Is it because she started it and the steriods at the same time? Was the predisone masking the upset feeling or was it something different?

She takes seizure medicine in the morning and night and I have been giving the Imuran in the morning after breakfast.

Any advise?
Thank you.
Steffani

 

[D Bergy]

If the timing is not an issue with the medications, then try a different time for the Imuran. Maybe the seizure medication and Imuran is too much at one time for the stomach.

I once took an experimental treatment that would make me ill all day if I took it in the morning, but would not bother me at all if I took it in the evening. I also further narrowed the timing to taking it two hours after a meal. For some reason, where the food was in my stomach and intestines mattered when taking this product.

Dan

 

[saidinstouch]

It is also possible she is having a reaction to the imuran and you should talk to a doctor who is on call no later than tomorrow in her doctors office if the doctor cannot be reached. Also it is possible that the timing is an issue so trying afternoon for the imuran might help as well to spread it out the timing as d_bergy said.

Just remember it is imperative that you talk to her doctor tomorrow(monday the 2nd). If that is not possible, talk to any doctor in that office or any other gi doctor (like yours if you have one) that you trust tomorrow. When I was on 6-mp (what imuran is metabolized into) I got a severe fever and eventually threw up a few times and had to stop immediately. Liver toxicity isn't something you want to mess around with, especially in someone her age. I don't want to scare you, just want to let you know the potential severity of not talking to her doctor asap.

http://www.medicinenet.com/azathioprine/article.htm

Nausea can be a standard side effect as well and blood tests will probably be needed to decide what to do next, but your doctor will know best.

Good luck and welcome to the forums. We all try to be as friendly and helpful as possible here. You will hopefully find us a great resource in the coming years for you and your daughter as our collective experience is one of the best knowledge bases you can find on this disease. This is of course experience based knowledge, but our experiences can give ideas and ways to deal with problems that we could never have imagined ourselves, so welcome and don't be a stranger to ask any question, no matter what it may be with this disease. We've probably heard it all .

 

[My Butt Hurts]

Welcome Steffani-
I am so sorry you even have to be here, but hopefully we can be a support system for you and your daughter. Keep calling that doctor every hour if you have to - let us know what he/she says.
Good luck, and I hope she's feeling better really soon.
MBH

 

[[email protected]]

Thank you all for your responses. I also noticed a bald spot on her late last night and the GI doctor called this morning. We are going to the ER today (we are snowed in right now...we live in Annapolis) to have her tested for toxicity to the Imuran. She is concerned at pancreatitis. It makes me so mad that I could not get in touch with her this weekend. I told her that we are going to look for a new doctor because this has happened a few times when we could not get in touch with anyone in the office.
I will let you know.
Steffani

 

[saidinstouch]

I wouldnt necessarily blame her for being unavailable during the weekend, but I would blame the group responsible for handling the on call doctor. As far as I know, all practices, especially specialists have a doctor who is on call for cases such as yours where they can be reached at any time of the day or night, weekday or weekend. The doctors do need a chance to have their free time as well, but you should not have been forced to wait as long as you did.

Assuming the problem was with whomever was supposed to get you in touch with the on call doctor, I would lay the blame at their feet as this is something very serious and I would suggest the doctor considers a different service to coordinate these issues if they want to keep your business. Changing doctors isn't easy, especially so young unless she hasn't been seen many times by this doctor. I just want to make sure you don't go running away from a good doctor for a reason that was outside her control. She very well may not have heard you were calling till this morning because their protocol would dictate someone else was supposed to handle the weekend cases. I could be 100% wrong here as well, but my experiences tend to say this falls with whomever managed getting you in touch with a doctor, rather than the doctor themselves.

If you still feel you want to change then by all means do it because you need to have a doctor who listens to you and knows what you and your daughter needs from her doctor. Just find out if the issue is with office management or the doctor herself first. Maybe they will shake things up a bit to become more accessible, or maybe they won't and then it is good reason to leave anyway because we all know you need your doctor available immediately sometimes.

One last suggestion for anyone reading this...GET YOUR DOCTOR'S EMAIL ADDRESS if they have one. I find I can reach my current GI anytime and quickly through email contact where phone contact often takes longer. It also helps me document the conversations so I don't forget something important later.

 

[[email protected]]

I have stuck with this doctor for some time now and have been very unhappy. We have had multiple commnication problems, appointments not scheduled right, no return call backs, 3 hour waits (with 3 young children in tow) and the only way I can get in touch with her is by leaving her nurse a message who never calls back until the next day. I do have her email address now but prior today, she would not give it to me.

I stayed with her because she is part of the Celiac Research Center and thought it would benefit us since Madeline has Celiac Disease as well, but I have been referred to another doctors at Johns Hopkins by a friend who has had Chrons for many years and has been very happy with her doctor. Once my daughter is stabilize, we will make the change. I agree that doctors need time off, but no one at the University of Maryland Hospital was able to get me to the GI on call. Even today, after she promised that the service would get to her immediatley, I had to try the number for over a hour to get in touch with her while we were on the hospital.

Thanks for your help. Does anyone have a GI doctor in the Annapolis/Balitmore/DC area that they would suggest.
Steffani

 

[kello82]

i was a patient of the Childrens Hospital of Philadelphia for many years and cannot reccomend them enough.
not sure exactly where youre located so i realize that may be a bit of a drive for you, but i live in CT, and found the 3 hour drive to be VERY worth it.
if youre interested ill give you the specific names of the team i was seen by. 2 GI's and 1 surgeon, and like i said, i cannot say enough nice things about them. they were great and took good care of me.

good luck with your daughter, i was diagnosed when i was 8, and had symtoms for 4 years before that. so i can relate to both her and your situation as her mom. best wishes.