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bor

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Jun 3, 2012
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My 16 year old daughter has been recently diagnosed with Crohns Disease after a year of being unwell and ending up in hospital for a week with bowel obstruction. Subsequent colonoscopy revealed inflamed area in the ileacical valve. Pathology results also confirmed Crohns.
She is on reducing prednisone and has been taking Imuran for 2 weeks. Absolutely no better, if anything worse.
Anyone else had this experience.
Appreciate any support.
Judy
 
Welcome to the forum. So sorry to hear your daughter is no better.

What dose of pred did she start on?

Imuran takes up to 3 -6 months to come effective. Is she having weekly blood tests?

Have you called your gi, the pred should have started to work with in days.

Dusty will come later with more advice. My daughter also 16 was only dx at the end of Janaury so I am still very new to crohn's.
 
thanks for your response. Yes, she is having fortnightly bloods. Her CRP result has increased from 8 to 10. She is on 10 mg of prednisone at the moment but has been reducing down over a few months from 50mg. She is lethargic, has joint pain and in constant pain. Also finding it hard to go the toilet. This is all so new to me, I'm in a constant state of panic!
 
I agree with Catherine. It took us a very long time 3-4 months before the 6-mp levels were high enough to be helpful.
IF you are already lower the pred hand she is getting worse then you need to put a call into your GI to let them know what is going on.

Hope you get answers soon.
 
As you can see from my signature, Sarah is on the same meds.

Sarah started on 30mg of pred, taper by 5mg per week. As she taped the pain come back and gi increased the dose of pred. Sarah is current down to 8mg.

Is your girl managing school?
 
a few hours a day. Has not been in since last Thursday. Too ill and lack of concentration. The school have been very understanding.
 
When was Sara dx. It would have been hard start to treatment with the surgery to recover from as well.

This my very basic understanding of treatment plan of pred and imuran. The pred is used to control the imflammation in the period before the imuran starts becoming effective.
 
HI
My son is 11 and after a yr of mostly declining with an occasional bright week, we started 50mg 6-mp and 40mg of prednisone to be tapered as the 6-mp kicks in in a few months this started about 2 weeks ago...well, it hasnt gone well.He started vomiting all meals, and had extreme nausia. The GI had to stop 6-MP to see if that was the cause, and put him on zofran for nausia...then last week came. Oh my! My son had diarreah all day and all night and headache as well. I found him crying in the bathroom early in the week due to having an accident as well as he tried to hold it???
We were up constantly and he was crying due to missing more school and it almost being over. He has been to school 3 days in the past month. I was scared since he was going so much and so often and kept drinking gatoraide...
He actually posted in facebook in the middle of the night about his misery which isnt him. He is an athlete who tries to give a bright face to everyone no matter how he feels...
I was really at the bottom as well feeling so helpless.
So, Doc started him on 60mg of prednisone along with the other meds (no 6MP yet)...
Finally, Saturday he stopped going continuously and he insisted on pitching in the playoff baseball game. I think those 2 innings he used every ounce of energy since he is so weak.
He asked me if the doc can keep him on this dose of prednisone for the next 2 weeks so he can go to school!!! I know it is supposed to be just a few days and then back to the 40mg which I find hard to accept as well (I didnt want him on pred to begin with).
So, you are so not alone in this bad dream...and yes, my son sits on my lap and I cradle his head as if he is 3. I just let him lay in my bed during the day for comfort.
He just picked out his clothes for school...after spending the afternoon working on a paper for school that was due a month ago...I realized he didnt get the education he needs in the past few months and had to take him step by step to write this paper correctly.
Sheryl
 
S only recently diagnosed beginning of May. Very new. No Crohns in the family.

Sheryl - It's so hard :(

What is most difficult is that my husband thinks I need to push her out to do things, which I think would be counterproductive. Perhaps I need to get him on the forums.
 
I hoping one of the more experience parents drop in soon.

Yes pred has some bad side effects but it normally work very quickly. It my daughter case allow her to get back school and begin swimming again. Sarah went from very severe pain, severe weight loss and sleeping 16.hours a day to back school within 6 day of starting pred. In sense it gave her life back.
 
Catherine
Funny you should say that. He was on 40mg for a week and a half with no improvement and even with the 60 he still has some issues. He doesnt have increased hunger either? He face is puffy though..I thought it would work so fast.
Sheryl
 
Sarah didnot really get the increase hungry and had to be prompted to eat and drink her 2 ensure. We were really making sure she ate in those first weeks. I know she was forcing herself to eat when she wasn't hungry. Drs were talking about putting her in hospital as bmi was under 15%. She has gained 10kg on pred but it has taken real effort to her part.
 
Bor, did your Sara did prompting to do things before crohns. Basicly she is the same teenager as before. That be said if she not ready do so it properly a good idea if she can least get up, dressed and shower most days. We all know how much better feel when we look good.
 
Hi Judy,
Welcome I am sorry you have to be here but glad you found us. 2 treatments have been found to really help the kids here in this forum. One is Enteral Nutrition and the other is LDN or Low Dose Naltrexone. I suggest doing a forum search dn read up on those. They are the 2 safest treatments with the least side effects of all the drugs offered. Enteral nutrition is the first line of treatment everywhere except the USA. LDN is still being studied. it is an old drug which had another use and was found accidentally to help with inflammation in the body and so it helps crohns. There are a lot of people on the forum who are using it including my daughter. Like I said do a search on the forum and read up on those 2 treatments. Feel free to PM me with any questions.
 
I also have bowel obstruction and is taking pred (25mg now), imuran(75mg, after 1 week 50mg) and pentasa(4g/d). There is little effect of pred. So I am wondering there are scars on my intestine. Hope aza would be effective.~
 
Hi and welcome.
Nothing more to add. You've gotten some great advice. I hope things improve.
My little farm girl Grace is 3.5. Still undiagnosed. We hope and pray that will change soon. It's hard at any age to watch your kids suffer. I hope you find answers here and feel welcomed.

Farmwife
 
Welcome. I don't have a lot to add except that if she has only taken the Imuran for two weeks then it probably isn't ready to work on it's own and the Predinisone taper might be too aggressive???? My daughter is on Remicade infusions and was also on Prednisone...every time we tapered symptoms got worse...was she ever feeling good on the higher doses of Pred?

In the end it was decided Remicade wasn't working 100% so we added Enteral Nutrition. She seems better but bloods tests today will tell us for sure. Perhaps adding EN to the Imuran might help???

Such a confusing time. I hope you find some answers and your girl is back to herself soon!
 
Hi Judy, I wanted to let you know that I completely understand your feelings. My 16 year old daughter was diagnosed in October of 2011 and it was a complete shock to us. I went through a period of denial and was very angry at the doctors who I thought were wrong. This is very very difficult especially at first. My daughter is on LDN along with other nutritional supplements. We don't just blindly give her vitamins. We have the levels tested for vit d3, zinc, b12, and iron and supplement accordingly. We have also added daily fresh carrot juice and fruit and vegetable smoothies.
You will find so much help here on this forum. You are most certainly in the right place. Just a note about pushing your daughter to do things: Until things are under control people with crohns may look fine but do not feel well at all. Even if they aren't in pain there can be an overwhelming feeling of fatigue. I used to get frustrated at Chloe and I thought she was being lazy. I couldn't understand how she could be on the couch all day. Now I know. She so much better now and she's back to doing things. It will get better for you too. Welcome to the forum.
 
I just wanted to add that I hope that you're getting support for you. Beyond the medical concerns, I think it's important that you have someone to talk to about how scary and frustrating all of this is. Take care,
lostandfound
 
Hi, just wanted to say welcome. Sorry your daughter is not doing very well. My son is on Azathioprine (I think the same as Imuran) and we were told it would take 6 - 12 weeks to start working then it needs time to settle down. Maybe they shouldn't have started the Pred taper until a few months when the other med has had a chance to kick in! As mentioned above it is worth looking into the EN. My son started off with that (we had no choice) and it gave us a good few months symptom free. Hope she feels better!
 
Welcome and sorry to hear about your daughter. I don't have experience with these, but seems every ride is a roller coaster. Best of luck she settles out quickly.
 
Just wanted to thank all you wonderful people so much.
Went to the GI and increased prednisone. also got some pain relief. Last night my daughter slept the whole night without pacing the house in pain. I'm keeping her home from school this week. Hope the rest will help.
 
Hi bor, welcome to the forum. Sorry your daughter is going through a tough time right now. I don't have any experience with Imuran and my son was only on pred for a short time. I just wanted to welcome you :)
 
Hi bor,

My 13 yr old son was also hospitalized for over a week prior to diagnosis. He has not had imuran but was on Humira (now on Remicade/Methotrexate). Humira also typically takes 2-3 months to start to work. As a result, he had a very rough time tapering off prednisone (4 attempts) - each time flaring up once he got below 20 mg. The last time we tapered much slower and this seemed to help bridge the time between coming off of prednisone and the meds actually kicking in.

You were right to go back to the GI to get the prednisone back up for a while, at least until the imuran starts to work.

I am still learning with my son when to push and when he needs to rest, but think for the most part, he wants to have as normal a routine as possible. He now sometimes stops to tell me "Mom I'm feeling really good today". Other days he lets me know that he feels off or unwell. I try to go by what he tells me, but have found a few times I've had to push him to go to school and it was the right decision.

I am glad your daughter has gotten some relief, welcome to the forum.
 
If the pain increase when she tapers,maybe ring the gi, ask whether she should go back to last level for a few more days or maybe taper a small amount. As this is what our gi advised us.
 
Hi bor and :welcome:

I'm so sorry to hear about your daughter...:hug:

As others have mentioned, Enteral Nutritional is something you may want to look into either as a alternative to Prednisone when her current course is completed or in conjunction with it now. As Kim has also suggested, look into LDN and research it, it may be something that will interest you or at the very least it never hurts to have it stored in the recesses of the brain! I have loads of stuff stored in mine, LDN included. :lol:

Again yes, it will take at least 3 months for the Imuran (Azathioprine) to become fully therapeutic. As a general rule you would commence on EN or Pred at the same time as the Imuran and remain on them for a couple months with the idea being that when those discontinue the immunosuppressive (Imuran) will take over. Of course there are variations on this.

It is good to hear you were able to get onto the doc and the increase in Pred seems to be working. :)

Do you know if they were able to pass the scope through the valve and into the terminal ileum?
Either way make sure she has blood levels done for B12, Folate, Iron Stores and Vitamin D when she next has bloods drawn. Even though her haemoglobin may be normal it doesn't mean she isn't anaemic, it may be one explanation for her lethargy.

You are right hun, don't push her at this point as it is far too early on in her diagnosis and there is still the 12 months of illness to overcome as well.

Good luck! I hope things settle for your Sara and she soon feeling much better!

Dusty. xxx
 
:welcome: bor

So sorry to hear your daughter has been unwell. My son was diagnosed in early February and was put on 40 mg of prednisone for 5 weeks and then we tapered by 5 mg per week. He started Imuran about 1 week after he started prednisone and it took about a month before he was at the full dose of Imuran. My son was stabilized quite quickly on the high dose of pred but it didn't induce remission as we had hoped. As a result we added enteral nutrition for a while and this helped him gain weight and corrected his anemia.

I think Imuran is starting to work for my son but it is taking a long time. He has been on it for just shy of 4 months and he is still struggling with overwhelming fatigue. Recently his terrible abdominal pains subsided which was a HUGE relief! It is so horrible to watch your child in pain. I have heard that Imuran can take up to 6 months to be effective so I am hoping what we are seeing is a gradual increase of its effectiveness. It is so hard to be patient and let the drugs take effect.

Also wanted to add that my son has only gone to school for about 2.5 hours every morning since January and has missed tons of whole days. After about 11am he feels so tired and sick he just can't stay. I've tried pushing him but it backfired and made him feel worse. We have been advised by our psychologist to try to set a pick up time for before he starts to feel really bad. We have been doing this for several weeks and just today he said to me that he thinks we could increase the time he spends at school!!! It is so hard to know what to do in all of this.

I hope your daughter is feeling better on the higher dose of predisone. If you find it is not working for her definitely look into enteral nutrition (EN).

:hang:
 
It's hard for me - because I'm not generally a patient person. But it's great to know others are in the same situation.
Awful, just awful to see your child in pain. Would rather it was me anytime.
 
Bor,

I am sorry that your daughter is having so much trouble. I think puberty really messes things up. We have been having trouble weaning my son(14) off prednisone this year also. 1 week after the first weaning, his crp and sed were right back where they started. After this 2nd wean, they are still there, but his symptoms have been a little better due to some diet adjustments and maybe the Remicade is kicking in. However, he is tired, pale and at a standstill on his weight.

My husband and I differ on the pushing him to do things also. I see the stress that pushing causes and stress can't make the crohn's any better. He feels crappy and if he gets out and does something, then fails at it...at this age, it really is a mental kick in the pants. I'd say let her recover and do things when she feels like it. Remind her though that doing some things might help her recover, so she should try something short and mildly active when she feels like it.
 

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