Hi I am a new member and feel in need of some support. My daughter was diagnosed with crohn's beg of march just before her 14th birthday, after it being IBS for over 12 months. she has crohn's in her colon and was put on prednisilone 40mg a day straight away with a view to tapering over a few weeks, but as she was reducing her symptoms increased. she was them put on azathiaprine however she was having quite a lot of side effects, including on a rare outing to the cinema with her friends she was sick in the cinema! bless her.x Her paediatric gastoenterologist then prescribed 6mp and still tapering her prednisilone, she's not down to 5mg a day and so far after 3 weeks on 6mp she seemed ok until earlier in the week when she started to be sick and back on the toilet again, they now think she has a tooth abcess! it's not fair! she has missed so much school since march, that in itself causes stress as you feel you should be trying to make her carry on but it's so hard. The symptoms vary so much from day to day. She was ok sunday, sunday night stomach pain and tried to go to school mon but to be sent home lunchtime and not back since. Am I being horrible trying to send her? I don't want it to get to a point where she doesn't want to go as she's quiet and does not mix well already. The shcool have been understanding but just managing on a day to day can be hard. I feel as if I'm being pulled in all directions and my husband and I see to always talk about crohn's! let alone what our daughter is going through. We just want her to be happy and as healthy as she can. Sorry to ramble on but have no support locally, gastroenterologist is 3 hours drive away and very nice and she has a local paediatrician who tries but it's the emotional support I feel we need. It's nice just getting this off my chest and thanks..::sign0144:
Worried/streesed mum
- Thread starter Rich29
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crohnsinct
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Welcome to the forum. I am so sorry that it is taking awhile to find what will work for your daughter. I don't have any experience with the drugs you mentioned. I am sure the experts will be along shortly to give you some advice. I think maybe the prednisone taper was a little too quick (a few weeks? Took my daughter months to get off Prednisone) as the one thing I do know about azathioprine is it takes a while for it to kick in.
Good luck and vent away...that is what we are here for. Oh and let me introduce you to our friend stabbie:voodoo: he comes in quite handy at making a mom feel better!
Good luck and vent away...that is what we are here for. Oh and let me introduce you to our friend stabbie:voodoo: he comes in quite handy at making a mom feel better!
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Hi and welcome,
Crohnsinct is right, vent and ramble away.
I'm so sorry to hear all this.
My girl is 3 and has been ill since 6mo. old. Very hard to watch. Grace my girl is going through the Dx process right now.
I know what you mean about talking to your hubby all the time about Crohn's.
It seems that's what we do in desperate hope of finding something that will help her.
It can feel lonely going through this. I hope you stay around and find peace of mind that were here to help and support each other. You might even get some good laughs out of it. That Crohnsinct is quiet funny with her big city attitude. We love her anyways:heart:
Farmwife:soledance:
Crohnsinct is right, vent and ramble away.
I'm so sorry to hear all this.
My girl is 3 and has been ill since 6mo. old. Very hard to watch. Grace my girl is going through the Dx process right now.
I know what you mean about talking to your hubby all the time about Crohn's.
It seems that's what we do in desperate hope of finding something that will help her.
It can feel lonely going through this. I hope you stay around and find peace of mind that were here to help and support each other. You might even get some good laughs out of it. That Crohnsinct is quiet funny with her big city attitude.
We love her anyways:heart:Farmwife:soledance:
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Welcome! I am sorry your daughter is having so much trouble. I can completely sympathize. My son is also 14 and was dx at age 12. This is a hard age to begin with and when you add crohn's it can feel out of control. Ryan is quiet and has a hard time with making friends. He misses out on sleepovers, doesn't do sports, and missing school makes him feel left out. When he goes back he feels awkward. He has matured so much through this and he has learned that his health is much more important than school. I think I am sadder about it because I feel like he isn't getting that childhood of goofing off, etc...
If he gets up and feels really bad, I let him stay home-no questioins asked. I call the GI and the fax an excuse to the school. If he feels okay or a little bad, he goes to school fully knowing he can call me and come home. The school has been very cooperative with all of this. Sometimes getting picked on or tests can trigger symptoms, so I think it gives him some power to know he can leave school if it gets too hard. He actually can make it through more days now because knowing it's his choice relieves the stress. Oddly enough, even being in a flare, he managed to make straight A's this year and has applied himself like I have never seen.
My husband and I talk crohn's nonstop also. Low weight, lack of energy, pale complexion, no motivation, approaches to treatment, blah, blah, blah... None of my friends here want to hear it all the time. They have healthy kids and just can't relate.
I know you will find lots of support here. There is someone who can relate to just about any problem you are facing! Take a deep breath! You've got this!
If he gets up and feels really bad, I let him stay home-no questioins asked. I call the GI and the fax an excuse to the school. If he feels okay or a little bad, he goes to school fully knowing he can call me and come home. The school has been very cooperative with all of this. Sometimes getting picked on or tests can trigger symptoms, so I think it gives him some power to know he can leave school if it gets too hard. He actually can make it through more days now because knowing it's his choice relieves the stress. Oddly enough, even being in a flare, he managed to make straight A's this year and has applied himself like I have never seen.
My husband and I talk crohn's nonstop also. Low weight, lack of energy, pale complexion, no motivation, approaches to treatment, blah, blah, blah... None of my friends here want to hear it all the time. They have healthy kids and just can't relate.
I know you will find lots of support here. There is someone who can relate to just about any problem you are facing! Take a deep breath! You've got this!
crohnsinct
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You brought tough NYC girl to tears also...remembering when I was at that same place. It gets better! Read the success stories when you are feeling down it reminds you that this place you are in is not forever. Yes you will have ups and downs but soon the ups are longer than the downs and all the ups you have help you deal with the downs. Remember we are all here no matter where you are! We will pick you up when you are down and rejoice when you are up.
We got your back!
We got your back!
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Just wanted to welcome you and echo what the others have said. This forum contains a wealth of information and insight but more importantly support! I'm so sorry your daughter is having to go through all of this.
Our school was a little reticent in the beginning with C not being diagnosed but the doc sent a letter explaining the situation. The school then jumped on board and really worked out a schedule that would work for my son during the worst part of his flare up.
This is such a wonderful place to vent and laugh and you know longer have the feeling of being alone in the struggle! I hope your daughter is feeling better soon!:soledance:
Our school was a little reticent in the beginning with C not being diagnosed but the doc sent a letter explaining the situation. The school then jumped on board and really worked out a schedule that would work for my son during the worst part of his flare up.
This is such a wonderful place to vent and laugh and you know longer have the feeling of being alone in the struggle! I hope your daughter is feeling better soon!:soledance:
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Welcome - sorry to hear about your daughter. It is really hard when you have to sit there and watch them suffer. We do not have much experience with medication as we just started Azathioprine 6 weeks ago, but from all I have read so far, it sounds like they are tapering the Pred too early. We were told the med takes even up to 12 weeks to really kick in and then it needs a chance to heal everything, so I would have thought she would be on a higher dose for longer.
I understand what you are feeling about school - we have had that problem over the last 4 months and it has been a struggle. I went into the school and spoke with my son's form teacher and explained everything to her. She sat down with the head of his year and they worked out which subjects were most important such as maths/english and laid out a timetable of 2/3 subjects a day for him to manage if he could. Then as he felt better he could stay for longer. Also she spoke to all the teachers and as soon as he is off, they email her worksheets which she emails to me and we have textbooks at home, which he can work through at his own pace throughout the day.
I know most councils also have teachers who go out to homes, but it varies as to when that can be used. I always feel he won't really learn well if he is having to go when he feels awful.
Hope everything settles down for her!
I understand what you are feeling about school - we have had that problem over the last 4 months and it has been a struggle. I went into the school and spoke with my son's form teacher and explained everything to her. She sat down with the head of his year and they worked out which subjects were most important such as maths/english and laid out a timetable of 2/3 subjects a day for him to manage if he could. Then as he felt better he could stay for longer. Also she spoke to all the teachers and as soon as he is off, they email her worksheets which she emails to me and we have textbooks at home, which he can work through at his own pace throughout the day.
I know most councils also have teachers who go out to homes, but it varies as to when that can be used. I always feel he won't really learn well if he is having to go when he feels awful.
Hope everything settles down for her!
Hi there - welcome to this forum - I discovered it a few months ago and it is really a wonderfull source of support. so sorry to hear about your daughters diagnosis. My daughter was diagnosed at 2 just about a year ago and it was the worst day of my life - it is so devastating when the diagnosis comes so I can fully appreciate where you are coming from with regards to the stress and worry.
I wish you the best
I wish you the best
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Welcome and I have to agree with all those before me. My heart goes out to you. My son will be 13 next month and was diagnosed at 10 years old. I have to agree with Sascot about the tapering off of pred. It seems like it took Jack forever to taper off about the time the azathioprine kicked in and reached theraputic levels we were finally off prednisone but it was about 5-6 months and was probably a whole year before he felt really well.
Come rant on here anytime just don't forget to cheer as well, I for one love to hear when someone is doing/feeling well so keep us up to date on her progress
Come rant on here anytime just don't forget to cheer as well, I for one love to hear when someone is doing/feeling well so keep us up to date on her progress
DustyKat
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Hi Rich29 and :welcome:
I am so very sorry to hear about your daughter, such a difficult and heartbreaking time for you all. :ghug:
If she has been on Pred since the beginning of March and is now down to 5mg then that would sound like an average taper, about 12 weeks. As a general rule Azathioprine/6MP will take at least 3 months to become fully therapeutic and is started at the same time as the Prednisone...Prednisone taper 12 weeks, Aza/6MP now therapeutic and takes over.
Did your daughter have what is called a TPMT blood test before commencing the Aza?
What side effects was she experiencing?
What were her symptoms at diagnosis and what are they now?
Did they ever mention Enteral Nutrition (EN) to you? That is generally a first line treatment in the UK but I wonder if they dismissed it because her disease is in the large bowel? In Crohn's disease EN is just as useful with large bowel disease so it may be worth looking into as a way of bringing her symptoms under control in conjunction with the medication she is already on. It will at least rest her bowel and provide her with adequate nutrition.
I wouldn't send her to school if she doesn't feel up to it. With my two I always felt that they wouldn't concentrate anyway so there was no point. When they did go they always had the option of leaving when they felt the need and as jm says, it certainly does reduce the stress knowing they have that option. Nothing worse than feeling unwell away from home.
Do you track her symptoms?
It may be worthwhile to keep a diary since her symptoms are persisting. Have a look at the the suggestions we have in the wiki...
http://www.crohnsforum.com/wiki/Diary-Inclusions
...it just may help put the pieces of the puzzle together for you and the doctors.
I so hope she doesn't have an abscess on top of everything else, poor love. I also hope more than anything that she is able to find peace and relief very soon. Once they hit on the right treatment things will return to normal hun, it is often a new normal but normal just the same.
:hang: there Mum! it will get better!
Dusty. xxx
I am so very sorry to hear about your daughter, such a difficult and heartbreaking time for you all. :ghug:
If she has been on Pred since the beginning of March and is now down to 5mg then that would sound like an average taper, about 12 weeks. As a general rule Azathioprine/6MP will take at least 3 months to become fully therapeutic and is started at the same time as the Prednisone...Prednisone taper 12 weeks, Aza/6MP now therapeutic and takes over.
Did your daughter have what is called a TPMT blood test before commencing the Aza?
What side effects was she experiencing?
What were her symptoms at diagnosis and what are they now?
Did they ever mention Enteral Nutrition (EN) to you? That is generally a first line treatment in the UK but I wonder if they dismissed it because her disease is in the large bowel? In Crohn's disease EN is just as useful with large bowel disease so it may be worth looking into as a way of bringing her symptoms under control in conjunction with the medication she is already on. It will at least rest her bowel and provide her with adequate nutrition.
I wouldn't send her to school if she doesn't feel up to it. With my two I always felt that they wouldn't concentrate anyway so there was no point. When they did go they always had the option of leaving when they felt the need and as jm says, it certainly does reduce the stress knowing they have that option. Nothing worse than feeling unwell away from home.
Do you track her symptoms?
It may be worthwhile to keep a diary since her symptoms are persisting. Have a look at the the suggestions we have in the wiki...
http://www.crohnsforum.com/wiki/Diary-Inclusions
...it just may help put the pieces of the puzzle together for you and the doctors.
I so hope she doesn't have an abscess on top of everything else, poor love. I also hope more than anything that she is able to find peace and relief very soon. Once they hit on the right treatment things will return to normal hun, it is often a new normal but normal just the same.
:hang: there Mum! it will get better!
Dusty. xxx
Hi all I am so glad that I plucked up the courage to join and post a message. It is such a relief that what we are going through is not unique and others have or are going through the same. I feel a weight of my shoulders and a bit sronger. Thanks Sascot I have already rung the school and have arranged a face to face meeting with her head of year and will take along some literature for them to try to understand what she is going through.
Hi Dusty, yes she did have a TPMT test prior to Azathiaprine which they said she was fine to start. She was ok for the first week but then vomited in the cinema when out with her friends and after started to suffer from feeling constantly sick, she was so dizzy she couldn't even get out of bed. she told me she felt as if she had just come off a rollercoaster and somebody had just hit her in the stomach and over the head. not nice at all. they then decided to change to 6MP and she felt better even after a couple of days and up until this week seemed to be doing better until this abscess. She's on 5mg of pred and is due to drop to one every other day from today but she is complaining og stomach ache so not dropping and she has an appointment on monday with her local consultant. When she was intially taken into hospital in feb they mentioned possibly started Modulen feed, however after having her gastroscopy, colonoscopy and MRI, they said as it was in the colon that meds were needed rather than the feed and she was put on 40mg pred there and then. Sorry I'm rambling on again, but it's such a relief. Thanks
Hi Dusty, yes she did have a TPMT test prior to Azathiaprine which they said she was fine to start. She was ok for the first week but then vomited in the cinema when out with her friends and after started to suffer from feeling constantly sick, she was so dizzy she couldn't even get out of bed. she told me she felt as if she had just come off a rollercoaster and somebody had just hit her in the stomach and over the head. not nice at all. they then decided to change to 6MP and she felt better even after a couple of days and up until this week seemed to be doing better until this abscess. She's on 5mg of pred and is due to drop to one every other day from today but she is complaining og stomach ache so not dropping and she has an appointment on monday with her local consultant. When she was intially taken into hospital in feb they mentioned possibly started Modulen feed, however after having her gastroscopy, colonoscopy and MRI, they said as it was in the colon that meds were needed rather than the feed and she was put on 40mg pred there and then. Sorry I'm rambling on again, but it's such a relief. Thanks
I am so sorry that your daughter is having to deal with this. It is very hard to hear a diagnosis of something like crohns. But do have hope. I can see that it is taking a while to get her feeling better, but hang in there.
I am so pleased you have found this site. I know when I first posted I cried with relief to read such supportive words from others. I had felt so alone and desperately needed to connect with other parents in the same boat. And it was great to have found this forum. And know there are lots of parents out there in various countries all feeling the same fear, worries, joys and laughs at the funny side of things.
Stay in touch, let us know how your daughter is progressing. I hope that things soon settle, if not perhaps the specialist can offer some options.
take good care of yourself too,
LilyRose
I am so pleased you have found this site. I know when I first posted I cried with relief to read such supportive words from others. I had felt so alone and desperately needed to connect with other parents in the same boat. And it was great to have found this forum. And know there are lots of parents out there in various countries all feeling the same fear, worries, joys and laughs at the funny side of things.
Stay in touch, let us know how your daughter is progressing. I hope that things soon settle, if not perhaps the specialist can offer some options.
take good care of yourself too,
LilyRose
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Good luck with the school, they should be helpful. My initial problem was they teachers felt too sorry for him to send work and he was getting behind. Had to explain it is chronic and he needs to be sent work anyway. Even if he can just read it through while in bed, at least he can get idea of what they are learning.
There are alot of people on here that will really advocate the EN (me included) and alot of kids take the medications and do EN at the same time. It might be worth asking if she can do the EN instead of the Pred and keep going with the 6mp. We were never given an option - our consultant in Glasgow said he had to do EN - if he couldn't drink it then he had to get the NG tube. He went to high school with the tube in his nose for 8 weeks (no one bothered him about it or teased him)
There are alot of people on here that will really advocate the EN (me included) and alot of kids take the medications and do EN at the same time. It might be worth asking if she can do the EN instead of the Pred and keep going with the 6mp. We were never given an option - our consultant in Glasgow said he had to do EN - if he couldn't drink it then he had to get the NG tube. He went to high school with the tube in his nose for 8 weeks (no one bothered him about it or teased him)
afidz
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Hello! I don't have very much to say because I am not a mom with a child with this disease but I hope she starts feeling better soon. I think I saw on here that there is a teens only section. I would encourage her to join or maybe find other forums online that she can join. It is important to keep good mental health through all of this (for all parties involved) When I was first diagnosed my mom somehow found a therapist that only dealt with people that had Chronic illnesses.
Welcome! You've gotten lots of good advice already. Hope your daughter starts feeling better real soon.
Sorry to hear how bad she is feeling. No advice but support as you need it I can give it. We never used 6mp. My DD had UC. Since has had a colectomy. I hope they can get it under control so you don't end where we are. It being in the colon and being crohns. Take care.
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Hi Welcome,
My daughter is also 14 and it has been a tough road for us but hang in there once they can figure out what works for her it will get better. I know they said EN would not wrk for her but a lot of people here have had good success with it even in the small bowel. Pop over to the EN forum and take a look. ALso look at the LDN forum. That is another drug that is not popular with the docs but has low side effects and works!
My daughter is also 14 and it has been a tough road for us but hang in there once they can figure out what works for her it will get better. I know they said EN would not wrk for her but a lot of people here have had good success with it even in the small bowel. Pop over to the EN forum and take a look. ALso look at the LDN forum. That is another drug that is not popular with the docs but has low side effects and works!
:welcome:
Sorry to hear about your daughter. It is such a terrible thing for all these kids to have to go through. You have had lots of great advice and I don't have much to add but I wanted to let you know that my son has missed a tremendous amount of school this year. Since January he has, at most, only gone to school for 2 or 3 hours per day and has missed a great many entire days. I tried to push him at first and then realized that he really did want to go and when he was saying he didn't feel up to it he really wasn't feeling up to it. I think when kids become chronically ill staying home from school doesn't have the same allure as it once did. We have kept up with his school work at home as best as we can. For a while there I found the whole do I send him to school or not decision very stressful. I am hopeful that when school goes back in September he will be able to do full days again and this will all become a distant memory.
I hope your daughter is feeling better soon. :hang:
Sorry to hear about your daughter. It is such a terrible thing for all these kids to have to go through. You have had lots of great advice and I don't have much to add but I wanted to let you know that my son has missed a tremendous amount of school this year. Since January he has, at most, only gone to school for 2 or 3 hours per day and has missed a great many entire days. I tried to push him at first and then realized that he really did want to go and when he was saying he didn't feel up to it he really wasn't feeling up to it. I think when kids become chronically ill staying home from school doesn't have the same allure as it once did. We have kept up with his school work at home as best as we can. For a while there I found the whole do I send him to school or not decision very stressful. I am hopeful that when school goes back in September he will be able to do full days again and this will all become a distant memory.
I hope your daughter is feeling better soon. :hang:
