My 15 year old daughter had an MRI on Friday...I got a call from her Dr this morning and its official...she has Crohns. The Dr proceeded to tell me that the we should stop the Pentasa as it is not doing anything to help her. She went on to say she wants to put her back on steroids...this is going CRUSH my already fragile child who has a HUGE self image problem. The last time she was on it her face pudged out...she went into a HUGE bout of depression. Then the Dr gave me a choice of 2 meds...6MP and Methotrexate. She said both could cause damage to other organs...at this point I lost it. My beautiful baby girl who has already been through so much in her 15 years is yet again dealing with something...something HORRIBLE that she will have forever! Now I have to choose which poison to give her. One pill a day or one injection a week...with the Methotrexate, she wont prescribe it unless I put her on Birth control pills becasue the drug causes SEVERE birth defects. Really? Another drug? To my teen who took a purity vow at church...who is so depressed she wont even leave her room? How is she gonna get pregnant if she wont leave her room and has no friends? I dont know how to tell her what I now know. I know there are far worse things she could have. Its just...we have been through so much already health wise with BOTH our kids. I ahte the idea of giving my kid a drug to fix one problem only to have to worry about it causing a WORSE problem. I cried for 3 hours after the call. WHen I called my husband he couldnt even understand what I was saying. Now she is home and I am faking a smile. Hubby and I need to talk before we tell her. Today was her first day back at school in 2 weeks. She had a flare and was in the hospital again. She lost over 10 pounds. Here is the weird thing. Other than pain...she has NO SYMPTOMS of crohns. NONE! Blood work normal...poop NORMAL! I dont know what Im trying to say here...just so scared and dont know what to do. ANy advice would be greatly appreciated.
Very scared mom
- Thread starter mom2girls
- Start date
Help Support Crohn's Disease Forum:
- Joined
- Apr 15, 2012
- Messages
- 14,730
So sorry this has happened.
EN can be just as effective as steroids in children at reducing inflammation.
Here is a link to the thread- ask your GI about it.
http://www.crohnsforum.com/showthread.php?t=36345
AS far as 6-mp vs. Methotrexate we tried both with my 8 year old.
6-mp is easy - pill once a day but blood work needs to be done weekly at first then every two week then once a months. etc....
IT can effect the liver but that is why the blood work is done to catch any issues early. DS ended up on allopurinol with the 6-mp since he body wanted to send most of the meds to his liver.:thumbdown:
Since it did not relieve all his symptoms we moved on to Methotrexate. He had to take 1 mg of folic acid daily and I had to give him a shot once a week.
He also had blood draws every two weeks.
His crohn's got worse so now he is on remicade.
You may want to get her to a therapist who deals with chronically ill children. Most Children's hospitals have them.
Finding the right med is hard but once you find it . It is SOOOO worth it. The difference between DS on Pentasa and Remicade is night and day. He sings he dances it is great.:ybiggrin:
The EN can also help with weight loss and let her grow properly .
http://www.naspghan.org/user-assets/..._Control_of.29[1].pdf
Study on different EN in children stating elemental vs polymeric did not make a significant difference in children.
EN can be just as effective as steroids in children at reducing inflammation.
Here is a link to the thread- ask your GI about it.
http://www.crohnsforum.com/showthread.php?t=36345
AS far as 6-mp vs. Methotrexate we tried both with my 8 year old.
6-mp is easy - pill once a day but blood work needs to be done weekly at first then every two week then once a months. etc....
IT can effect the liver but that is why the blood work is done to catch any issues early. DS ended up on allopurinol with the 6-mp since he body wanted to send most of the meds to his liver.:thumbdown:
Since it did not relieve all his symptoms we moved on to Methotrexate. He had to take 1 mg of folic acid daily and I had to give him a shot once a week.
He also had blood draws every two weeks.
His crohn's got worse so now he is on remicade.
You may want to get her to a therapist who deals with chronically ill children. Most Children's hospitals have them.
Finding the right med is hard but once you find it . It is SOOOO worth it. The difference between DS on Pentasa and Remicade is night and day. He sings he dances it is great.:ybiggrin:
The EN can also help with weight loss and let her grow properly .
http://www.naspghan.org/user-assets/..._Control_of.29[1].pdf
Study on different EN in children stating elemental vs polymeric did not make a significant difference in children.
- Joined
- Oct 26, 2011
- Messages
- 1,358
I am so sorry you and your beautiful girl are facing this right now. I share your sadness when my son was diagnosed at 11 years old. It felt like his life would never be the same, and my heart ached for everything he would lose out on and have to endure. But it gets better. He did 3 months of prednisone. He did get chipmunk cheeks but they went away once he was done. He is in remission now and life is back to normal. He has been on 6mp for 10 months now and is doing wonderfully. He had no symptoms except weight loss either so it was hard to choose such a drastic drug. But I think that trying to get this disease under control as soon as you can gives you the best chance at getting her in remission and keeping her there.
This article talks about the risks and benefits of the drugs your Dr. recommended. It made me feel a lot better once I read it. http://www.ccfa.org/assets/pdfs/risks-and-benefits-transcript.pdf
There are drugs being developed that I believe will drastically change the way this disease is treated in the future. I believe our kids will have a better life than others who have had crohn's just 20 years ago.
Hang in there mom, it will get better. She will be a stronger person because of this.
((((Hugs))))))
This article talks about the risks and benefits of the drugs your Dr. recommended. It made me feel a lot better once I read it. http://www.ccfa.org/assets/pdfs/risks-and-benefits-transcript.pdf
There are drugs being developed that I believe will drastically change the way this disease is treated in the future. I believe our kids will have a better life than others who have had crohn's just 20 years ago.
Hang in there mom, it will get better.
She will be a stronger person because of this. ((((Hugs))))))
Hugs to you and your daughter. I'm sorry you had to find us but this is such a great group to get support and information from. You are NOT alone!!
I 2nd the EN! Check out the thread MLP mentioned and see if it's something you think your daughter could do. My son was able to put on 18lbs over 4 months. We are still working to get him into remission since his diagnosis in February. He currently gets weekly methotrexate shots along with Remicade and is doing soooo much better.
Making all the medication decisions is tough. There is no right or wrong answer. There is no one size fits all. Hang in there. Things will get better! We are all here for you.
I 2nd the EN! Check out the thread MLP mentioned and see if it's something you think your daughter could do. My son was able to put on 18lbs over 4 months. We are still working to get him into remission since his diagnosis in February. He currently gets weekly methotrexate shots along with Remicade and is doing soooo much better.
Making all the medication decisions is tough. There is no right or wrong answer. There is no one size fits all. Hang in there. Things will get better! We are all here for you.
- Joined
- Jun 14, 2011
- Messages
- 6,512
It's overwhelming when you get that diagnosis, please know we all understand how frightening this is and your fears for the future. Please believe it will get easier and your daughter will feel better, will get on with her life and your fears will lessen! :ghug:
My son was diagnosed just before he turned 17, May 2011. I knew nothing about Crohns and was terrified of what his future held! Since then, using EN as a treatment, he has been in clinical remission (still has some inflammation but few outward symptoms), he went back to playing competitive hockey, got his driver's license, graduated, went away on a grad weekend and does nothing more than look forward to his future. He does have some 'off' days, he continues to use an NG tube every night for his EN formula and he is aware that he may have to add meds to control the inflammation - but he is managing his illness and it is not stopping him. I've included a link to the success stories on the Parent's forum - it may help you to read some of the stories of kids who are doing well.
http://www.crohnsforum.com/showthread.php?t=27079
It is not easy to decide on any of these medications, I don't think that will ever be easy for any of us Learn about the treatments, ask questions, etc. - it will help alleviate some of the unknowns. Ask about Enteral Nutrition (EN) as a possible treatment option. Low Dose Naltrexone (LDN) is another low risk treatment, however, this treatment is not widely accepted amoung GIs. You will find information for both under the treatment section.
Thinking of you! :ghug:
My son was diagnosed just before he turned 17, May 2011. I knew nothing about Crohns and was terrified of what his future held! Since then, using EN as a treatment, he has been in clinical remission (still has some inflammation but few outward symptoms), he went back to playing competitive hockey, got his driver's license, graduated, went away on a grad weekend
and does nothing more than look forward to his future. He does have some 'off' days, he continues to use an NG tube every night for his EN formula and he is aware that he may have to add meds to control the inflammation - but he is managing his illness and it is not stopping him. I've included a link to the success stories on the Parent's forum - it may help you to read some of the stories of kids who are doing well. http://www.crohnsforum.com/showthread.php?t=27079
It is not easy to decide on any of these medications, I don't think that will ever be easy for any of us
Learn about the treatments, ask questions, etc. - it will help alleviate some of the unknowns. Ask about Enteral Nutrition (EN) as a possible treatment option. Low Dose Naltrexone (LDN) is another low risk treatment, however, this treatment is not widely accepted amoung GIs. You will find information for both under the treatment section.Thinking of you! :ghug:
Catherine
Moderator
- Joined
- Jan 30, 2012
- Messages
- 3,912
As the mother of a now 17 year old girl, who was dx in the January 2012. I would have big issues with her if anyone tried to put her a birth control, so that she could take medication.
These decisions are hard, but if girl/teenager is not sexual active why should have to take the birth control..
These decisions are hard, but if girl/teenager is not sexual active why should have to take the birth control..
Hello,
I wanted to say I am so sorry to hear that your daughter has had such a difficult itme, it is so awful to hear they are facing a chronic condition.
Some things that may help:
- Reading up on crohns and treatments, what the likelihood of side effects are
- Getting a second opinion on treatment plans, or having a further discussion with your current doctor about any other options that may be suitable such as Enteral Nutrition.
- Finding some emotional support for you and your daughter perhaps seeking a counsellor who understands about chronic conditions such as crohn's.
- Linking in with others with crohn's - such as this forum or through the american crohns and colitis assciation.
- Be very kind to yourself, people have said there is a period of grief when you have to adjust to a diagnosis like this.
Take care and let us know how things are going.
Lily Rose
I wanted to say I am so sorry to hear that your daughter has had such a difficult itme, it is so awful to hear they are facing a chronic condition.
Some things that may help:
- Reading up on crohns and treatments, what the likelihood of side effects are
- Getting a second opinion on treatment plans, or having a further discussion with your current doctor about any other options that may be suitable such as Enteral Nutrition.
- Finding some emotional support for you and your daughter perhaps seeking a counsellor who understands about chronic conditions such as crohn's.
- Linking in with others with crohn's - such as this forum or through the american crohns and colitis assciation.
- Be very kind to yourself, people have said there is a period of grief when you have to adjust to a diagnosis like this.
Take care and let us know how things are going.
Lily Rose
- Joined
- May 23, 2011
- Messages
- 1,549
First off, hugs. I am so sorry you were faved with this.
I also support EN. We used it for weight loss but dd experienced less pain while on it, and if anything, it is absolutely worth a shot. We used peptamen jr.
I am not certain how I would feel about her being "required" to be on bc. She is 15. I think I would ask the doc to consider verbal counseling, which both you and your daughter present, discussing the risks of getting pregnant while taking this particular medication, and discussion rearding the importance of letting you know if she decides to become sexually active to ask to be put on birth control. Only you know your child, and while I think the doc is covering all bases, I don't think that it is terribly appropriate to require a 15 year old to take bc.
Hugs for the tough decisions ahead!
I also support EN. We used it for weight loss but dd experienced less pain while on it, and if anything, it is absolutely worth a shot. We used peptamen jr.
I am not certain how I would feel about her being "required" to be on bc. She is 15. I think I would ask the doc to consider verbal counseling, which both you and your daughter present, discussing the risks of getting pregnant while taking this particular medication, and discussion rearding the importance of letting you know if she decides to become sexually active to ask to be put on birth control. Only you know your child, and while I think the doc is covering all bases, I don't think that it is terribly appropriate to require a 15 year old to take bc.
Hugs for the tough decisions ahead!
I started taking 6MP before I was 15 (don't remember how old I was when I started really) and continued taking it until a few months ago (I'm 30 now). I never had any side effects from it. The thing is you have to have regular blood work done (I did mine once a month) to make sure its not affecting other organs. As for the birth control I started taking it when I was 14 because I had some pretty bad periods and my mom thought for sure I was sexually active (I wasn't until I was 16). I'm still taking it to this day (not the same one, I take Junel now but used to take Ortho Cyclen). Maybe this info isn't helpful but just wanted to let you know that it is possible to not have any side effects from those two at least.
Any chance you can ask for Entocort instead of Prednisone? It has less side effects (you wont have that same kind of water retention at all) but does take a little longer to start working.
Any chance you can ask for Entocort instead of Prednisone? It has less side effects (you wont have that same kind of water retention at all) but does take a little longer to start working.
- Joined
- Aug 28, 2011
- Messages
- 3,376
Sorry to hear about your daughter! I know how you feel about the meds. So far we have tried Azathioprine for 6 weeks and that didn't work out so we are med free at the moment. The GI keeps mentioning 6mp but so far I have put him off! I have a feeling of terror when I think about it too much. My son has no symptoms at all at the moment (just a scar from surgery in April) so I am really reluctant to start anything. I know we will have to go there sometime though! Good luck with your decisions!
- Joined
- Sep 16, 2012
- Messages
- 228
Hi well firstly can I just say I really feel for u , must be so hard espeacially with the trials and tribulations a normal teen has to deal with, I do hope you havnt had to deal withbto much worry and anticipation from your daughter please keeps updated on how u have gotten on with her doc and how she is coping with it all, sending positive thought tou from over the sea,xx
DustyKat
Super Moderator
- Joined
- May 8, 2010
- Messages
- 23,973
Hi mom2girls and :welcome:
I am so very sorry to hear about your daughter and the heartbreaking decisions you are facing.
I wholeheartedly agree with the recommendation of EEN and particularly in view of the issues your daughter has with taking it. If you don't mind me asking, why was she on it before and why was she commenced on Pentasa before she had a confirmed diagnosis?
Where is your daughter's Crohn's located and how severe is it?
Unfortunately the symptoms of Crohn's are so many and varied that it often leads to long periods of being undiagnosed and the sufferers and their carers scared, confused and frustrated. It is not a rarity to have normal bloods when flaring and for some diarrhoea is never a symptom. Both of my children had normal bowel motions and my daughter's blood's always returned normal results.
Both of my children take Azathioprine (Imuran) as a maintenance medication, it is also an immunosuppressant. I too hate the thought of it, it breaks my heart but I fear under treated Crohn's just as much, talk about between a rock and a hard place! Ugh!
Now I must say...that is the first I have ever heard of a doctor refusing to prescribe Methotrexate unless the patient takes the Pill! The doctor is bang out of order in saying that to you. Yes, the drug does have the potential to cause serious birth defects but it is the doctors role to inform and advise about those risks, and they may strenuously advise in favour of the pill to young female patients particularly if they are sexually active but it is not their place to deny it.
I know it is too hard for you right now to see the light at the end of tunnel but it is there hun and it does get easier, for you and your daughter. I have also been to hell and back with both of my children but they are now both in remission and living life to FULL!
Dusty. xxx
I am so very sorry to hear about your daughter and the heartbreaking decisions you are facing.
I wholeheartedly agree with the recommendation of EEN and particularly in view of the issues your daughter has with taking it. If you don't mind me asking, why was she on it before and why was she commenced on Pentasa before she had a confirmed diagnosis?
Where is your daughter's Crohn's located and how severe is it?
Unfortunately the symptoms of Crohn's are so many and varied that it often leads to long periods of being undiagnosed and the sufferers and their carers scared, confused and frustrated. It is not a rarity to have normal bloods when flaring and for some diarrhoea is never a symptom. Both of my children had normal bowel motions and my daughter's blood's always returned normal results.
Both of my children take Azathioprine (Imuran) as a maintenance medication, it is also an immunosuppressant. I too hate the thought of it, it breaks my heart but I fear under treated Crohn's just as much, talk about between a rock and a hard place! Ugh!
Now I must say...that is the first I have ever heard of a doctor refusing to prescribe Methotrexate unless the patient takes the Pill! The doctor is bang out of order in saying that to you. Yes, the drug does have the potential to cause serious birth defects but it is the doctors role to inform and advise about those risks, and they may strenuously advise in favour of the pill to young female patients particularly if they are sexually active but it is not their place to deny it.
I know it is too hard for you right now to see the light at the end of tunnel but it is there hun and it does get easier, for you and your daughter. I have also been to hell and back with both of my children but they are now both in remission and living life to FULL!
Dusty. xxx
so many decisions
Thank you all for your words of encouragement. It has helped. I am passing the greiving stage and entering the ANGRY stage now. This is her 2nd GI The first one was assigned to her in the hospital. It was and Indian Dr and I couldnt understand him. He also was not very informative. While doing her colonoscopy he said he could plavce a tube down her nose and inject the barium while she slept so she wouldnt have to swollow it since she was throwing up...I agreed...what he didnt explain is that when she woke up she would have this tube STILL in her nose. She went 24 hours with this...scared...and in pain...and they put the barium in while she was awake! I finally told thme to GET IT OUT NOW! When her test results came back he said...and I quote "She is an inigma...she shows one sign of several different problems..since one sign is crohns Im going to say she has crohns." Her blood work was lost twice in the hospital. He then put her on Pentasa and steroids. This was at Christmas. During the Summer my daughter stopped taking her pentasa without telling me cause she felt good. She had NO ISSUES! When school started she was really deprssed and stressed again so she started taking her pentasa JUST IN CASE. That is when her stomach started to hurt again. And ended back in the hospital. They did an MRI and said she had inflamation. In the mean time she stopped herpentasa again and the pain STOPPED! How am I to know this isnt becasue of the pentasa??? What if she had some weird infection (which was mentioned it could have been that) and being on Pentasa didnt just make it worse? She has not been on any meds in about a month and feels GREAT! Im so frustrated. Once the MRI came back her new Dr said to stop the pentasa...I told we already did because of the pain. There is NO CURE FOR CROHNS...treatment is a guessing game...trial and error to see what works for you. My kid is not a test subject. Im pissed that this Dr lumps my kid in with EVERYONE ELSE! She knows nothing about my kid. How religious she is...her beliefs...her dreams...Its not her job to decide if she shopuld be on birth control. Thats MINE! I have an appointment with a new GI...but cant get in till mid October! There has to be more tests or someone out there who will listen to me. I am not "IN DENIAL" like the Dr said. I just have not been shown beyond a shadow of a doubt this is crohns. There are too many unanswered questions. Im done crying for now...now I want answers.
Thank you all for your words of encouragement. It has helped. I am passing the greiving stage and entering the ANGRY stage now. This is her 2nd GI The first one was assigned to her in the hospital. It was and Indian Dr and I couldnt understand him. He also was not very informative. While doing her colonoscopy he said he could plavce a tube down her nose and inject the barium while she slept so she wouldnt have to swollow it since she was throwing up...I agreed...what he didnt explain is that when she woke up she would have this tube STILL in her nose. She went 24 hours with this...scared...and in pain...and they put the barium in while she was awake! I finally told thme to GET IT OUT NOW! When her test results came back he said...and I quote "She is an inigma...she shows one sign of several different problems..since one sign is crohns Im going to say she has crohns." Her blood work was lost twice in the hospital. He then put her on Pentasa and steroids. This was at Christmas. During the Summer my daughter stopped taking her pentasa without telling me cause she felt good. She had NO ISSUES! When school started she was really deprssed and stressed again so she started taking her pentasa JUST IN CASE. That is when her stomach started to hurt again. And ended back in the hospital. They did an MRI and said she had inflamation. In the mean time she stopped herpentasa again and the pain STOPPED! How am I to know this isnt becasue of the pentasa??? What if she had some weird infection (which was mentioned it could have been that) and being on Pentasa didnt just make it worse? She has not been on any meds in about a month and feels GREAT! Im so frustrated. Once the MRI came back her new Dr said to stop the pentasa...I told we already did because of the pain. There is NO CURE FOR CROHNS...treatment is a guessing game...trial and error to see what works for you. My kid is not a test subject. Im pissed that this Dr lumps my kid in with EVERYONE ELSE! She knows nothing about my kid. How religious she is...her beliefs...her dreams...Its not her job to decide if she shopuld be on birth control. Thats MINE! I have an appointment with a new GI...but cant get in till mid October! There has to be more tests or someone out there who will listen to me. I am not "IN DENIAL" like the Dr said. I just have not been shown beyond a shadow of a doubt this is crohns. There are too many unanswered questions. Im done crying for now...now I want answers.
crohnsinct
Well-known member
- Joined
- Mar 10, 2012
- Messages
- 6,348
Go Get Em Mama!
- Joined
- Jun 14, 2011
- Messages
- 6,512
Wow, I can imagine how frustrated and furious you are!!! We were lucky in getting my son's diagnosis fairly quickly but the few months leading up to the diagnosis were terrible, test after test with no answers and hearing 'well, let's see how things go for a month' and 'well, don't know what's wrong but let's try this drug'!!! I know every parent here can understand your anger! And, I'm sorry you haven't had much luck in finding a GI that you can trust, I hope the next GI will listen and help you!
Every case of crohns is different, and it can take some trial and error to find the right treatment. Bear in mind, my knowledge only comes from what I've learned through my son's experience (and from here) so… but, FWIW, I think as your daughter is feeling well, waiting until October for the next apptmt may not cause a problem. However, I'm sure this goes without saying but just keep an eye on any symptoms. My son exhibits few symptoms but his MREs show continuing inflammation and this will eventually cause a problem if not treated (we are also waiting for an apptmt with a new GI in October).
While you are waiting for the apptmt, have a look through the Diet forum. While diet can't cure Crohns, many people have found it helps and it may help avoid triggers before your apptmt - many people find there are certain foods that more commonly cause problems, ie dairy, gluten, high fibre, etc.
I don't suggest you attempt Exclusive EN without being under the direction of a doctor, however, you can use the nutritional shakes as a supplement to her diet. She may be having problems absorbing all the necessary nutrients from her diet and the EN shakes are formulated to be easily absorbed. Please look at the Enteral Nutrition section under Treatments, also within this forum, under the Diet for kids subforum, there is a thread called Kids on EN which has lots of info.
Exclusive EN has a comparable success rate at inducing remission as steroids with zero side effects. However, it is not easy as no food is allowed for the exclusive period (usually around 6 weeks) as all nutrition comes from the formula. The formula only period allows for bowel rest and healing. For some reason, in the US, it's not as commonly used as it is every where else - become familiar with the treatment so you can speak to the GI about it.
Also, look at the information for Low Dose Naltrexone (again, there is a subforum under Treatment) and a thread in this forum. This is another low risk treatment but most GIs are not comfortable with it as there aren't many studies backing it's use. But, there are a number of members here who have found success with it. I'm hoping my son's new GI will consider LDN as I believe the greatest risk in trying it is if it doesn't work, the crohns hasn't been treated during that time. But, my thinking is that's a risk with any treatment choice.
But, by suggesting EN and LDN, I am not saying that 6MP or Metho are not the right choices for her. There are many kids and members here who have found both these medications to be the treatment options that have successfully maintained their remissions (with few side effects). I just wanted to suggest a couple of other treatment options that have lower risks and may not be as readily suggested by your GI.
Hope some of this helps :ghug:
Every case of crohns is different, and it can take some trial and error to find the right treatment. Bear in mind, my knowledge only comes from what I've learned through my son's experience (and from here) so… but, FWIW, I think as your daughter is feeling well, waiting until October for the next apptmt may not cause a problem. However, I'm sure this goes without saying but just keep an eye on any symptoms. My son exhibits few symptoms but his MREs show continuing inflammation and this will eventually cause a problem if not treated (we are also waiting for an apptmt with a new GI in October).
While you are waiting for the apptmt, have a look through the Diet forum. While diet can't cure Crohns, many people have found it helps and it may help avoid triggers before your apptmt - many people find there are certain foods that more commonly cause problems, ie dairy, gluten, high fibre, etc.
I don't suggest you attempt Exclusive EN without being under the direction of a doctor, however, you can use the nutritional shakes as a supplement to her diet. She may be having problems absorbing all the necessary nutrients from her diet and the EN shakes are formulated to be easily absorbed. Please look at the Enteral Nutrition section under Treatments, also within this forum, under the Diet for kids subforum, there is a thread called Kids on EN which has lots of info.
Exclusive EN has a comparable success rate at inducing remission as steroids with zero side effects. However, it is not easy as no food is allowed for the exclusive period (usually around 6 weeks) as all nutrition comes from the formula. The formula only period allows for bowel rest and healing. For some reason, in the US, it's not as commonly used as it is every where else - become familiar with the treatment so you can speak to the GI about it.
Also, look at the information for Low Dose Naltrexone (again, there is a subforum under Treatment) and a thread in this forum. This is another low risk treatment but most GIs are not comfortable with it as there aren't many studies backing it's use. But, there are a number of members here who have found success with it. I'm hoping my son's new GI will consider LDN as I believe the greatest risk in trying it is if it doesn't work, the crohns hasn't been treated during that time. But, my thinking is that's a risk with any treatment choice.
But, by suggesting EN and LDN, I am not saying that 6MP or Metho are not the right choices for her. There are many kids and members here who have found both these medications to be the treatment options that have successfully maintained their remissions (with few side effects). I just wanted to suggest a couple of other treatment options that have lower risks and may not be as readily suggested by your GI.
Hope some of this helps :ghug:
- Joined
- Apr 15, 2012
- Messages
- 14,730
Hugs it is not uncommon to get a 2nd opinion .
Also crohns can wax and wane with symptoms so pentasa may or may not be the cause.
As far as the inflammation did your daughter ever have an upper lower egd ( scope)?
This would help determine if the biopsy samples showed acute or chronic inflammation.
Chronic would be crohn .. Acute could be either infection or crohns.
If your " lucky" like us then the biopsies will show granulomas which can only be two things --- one is crohns.
We still had 3 gi's look at DS over the course of a year each and every one stated no doubts its crohns .
Still does not make the drug choices any easier.
However there are many teenagers who wait talk about what their symptoms and end up with lots Damage requiring removal by surgery.
I understand the need to be sure before giving drugs.
I also understand finding a Gi you trust.
But if you don't believe the Gi then you need to find a new one quickly.
If there is inflammation showing up on an MRI then the odds are pretty good its crohns not from an infection. We have had two ct scans and an MRI and still don't have any inflammation showing up on them but the biopsies definitely show inflammatory changes for DS.
Uncontroled inflammation can lead very bad and scary things.
Most much worse than the side effects of some of the drugs.
I think yOu need to ask for a copy of all her medical records.
Sometimes it helps to read the reports yourself- I know it helps me.
Remember the five stages of grief do not go in order and sometimes you go back to one you think you are done with. A year later I know I am still grieving just not as much as in the beginning.
Also crohns can wax and wane with symptoms so pentasa may or may not be the cause.
As far as the inflammation did your daughter ever have an upper lower egd ( scope)?
This would help determine if the biopsy samples showed acute or chronic inflammation.
Chronic would be crohn .. Acute could be either infection or crohns.
If your " lucky" like us then the biopsies will show granulomas which can only be two things --- one is crohns.
We still had 3 gi's look at DS over the course of a year each and every one stated no doubts its crohns .
Still does not make the drug choices any easier.
However there are many teenagers who wait talk about what their symptoms and end up with lots Damage requiring removal by surgery.
I understand the need to be sure before giving drugs.
I also understand finding a Gi you trust.
But if you don't believe the Gi then you need to find a new one quickly.
If there is inflammation showing up on an MRI then the odds are pretty good its crohns not from an infection. We have had two ct scans and an MRI and still don't have any inflammation showing up on them but the biopsies definitely show inflammatory changes for DS.
Uncontroled inflammation can lead very bad and scary things.
Most much worse than the side effects of some of the drugs.
I think yOu need to ask for a copy of all her medical records.
Sometimes it helps to read the reports yourself- I know it helps me.
Remember the five stages of grief do not go in order and sometimes you go back to one you think you are done with. A year later I know I am still grieving just not as much as in the beginning.
DustyKat
Super Moderator
- Joined
- May 8, 2010
- Messages
- 23,973
They diagnosed her from an MRI?
Scopes remain the gold standard when it comes to a diagnosis as that is the only method by which you can obtain physical evidence...biopsies. Scopes will only reach a very small portion of the small bowel though so additional testing via a pill cam, if suitable, may be indicated if scopes can't reach where disease is suspected. Do you know what the biopsies from the colonoscopy actually showed and what they saw?
Where on the MRI was the inflammation located?
Has she had faecal calprotectin/lactoferrin testing done?
This is a stool sample that tests for inflammation in the bowel and is very, very useful tool as an indicator of Inflammatory Bowel Disease and treatment response. Like any test it isn't always accurate but does have very high reliability.
I would certainly be pushing for a second, third or however many it takes opinion ASAP. In the interim keep a diary of your daughter's symptoms if you aren't already doing so. It will help you keep track of things and can be very useful when searching for a diagnosis. It is harder for doctors to refute black and white evidence. You may find these suggestions useful...
http://www.crohnsforum.com/wiki/Diary-Inclusions
Dusty. xxx
Scopes remain the gold standard when it comes to a diagnosis as that is the only method by which you can obtain physical evidence...biopsies. Scopes will only reach a very small portion of the small bowel though so additional testing via a pill cam, if suitable, may be indicated if scopes can't reach where disease is suspected. Do you know what the biopsies from the colonoscopy actually showed and what they saw?
Where on the MRI was the inflammation located?
Has she had faecal calprotectin/lactoferrin testing done?
This is a stool sample that tests for inflammation in the bowel and is very, very useful tool as an indicator of Inflammatory Bowel Disease and treatment response. Like any test it isn't always accurate but does have very high reliability.
I would certainly be pushing for a second, third or however many it takes opinion ASAP. In the interim keep a diary of your daughter's symptoms if you aren't already doing so. It will help you keep track of things and can be very useful when searching for a diagnosis. It is harder for doctors to refute black and white evidence. You may find these suggestions useful...
http://www.crohnsforum.com/wiki/Diary-Inclusions
Dusty. xxx
- Joined
- Sep 19, 2010
- Messages
- 4,379
Hi I am so sorry you have to be here but am glad you found us. My daughter was diagnosed four days before her 11th birthday. I and many of us others have had to go through these choices looking at these scary medications and making a decision to use them on our babies. I highly recommend doing what Tess said and looking into EN ( enteral nutrition) and LDN (low dose naltrexone). Both are very safe options. Look in the treatment section on this website. For us LDN has been a miracle drug. My doctor had known nothing about it and we had to fight to get him to agree for us to use it but I am so glad we did. Many others have had similiar experiences with their doctors so if you decided to try it be prepared to fight for it. The reason is it is a drug that was originally used for something else and they found it helps autoimmune disorders including crohns but the drug became generic so there is no money behind it so it is not pushed the way these other drugs are. Please keep us posted on how your daughter is doing.
Similar threads
