My teenage daughter woke up two weeks ago with what I thought was the stomach virus going around. By 7 am her pain was so intense she was asking to go to the dr. The dr. immediately sent us to Children's Hospital. After an xray and ct scan we were told she had a stricture between her small intestine and large intestine. We were immediately introduced to a surgeon and gastro dr. An ng tube was put in place (torture! she was given no sedatives!). We were admitted and the tube stayed in place for 2 1/2 days. She was also put on Cypro. She responded well once the tube was removed and the stricture was opened. We were released two days later to wait for results of the Premethius test. All of her tests at the hospital were negative for Crohns in the hospital. Last week we were told the test came back positive and were immediately scheduledR for endoscopy/colonscopy. These showed a very small (less than two inches) area of Crohns. The doctor was very pleased with this and put her on 9 mg of Entocort everyday for 6 weeks and a low residue diet. Praying she can handle since senior pictures are next month. She need a HepB booster and in 6 weeks she will be put on Imuran and 6 mp. Remicade and Humira are not a part of the treatment so far. My daughter had shown no signs of this before and was in perfect health. She is feeling fine now. My questions are what do I need to know I have read everything I possibly can and she doesn't fit the norm. Crohn's is in the fly - paternal Grandmother - and none of her symptoms match - she has never had diaherea. What else can I do besides the meds - which sound absolutely horrible. Dr. said if she can stay on them for four yrs she can be free of this - is that true? Any help suggestions would be appreciated!!!
HELP-teenage daughter just diagnosed
- Thread starter nolamom
- Start date
Help Support Crohn's Disease Forum:
Hey Nolamom,
So sorry to hear about your daughter's diagnoses. My son was diagnosed 3 years ago when he was 13. He had no symptoms prior to the onset of "the stomach flu" or what we thought was the flu (everyone else had it?!) He spent just shy of 6 weeks in the hospital and diarrhea was his main issue also. He was placed on prednisone short term and then on Pentasa.
I wish I had more information on the drugs your daughter was put on, but others will be by soon I am certain. I pray she continues to feel well and she gets the great Senior picture she's hoping for!!
God bless!
So sorry to hear about your daughter's diagnoses. My son was diagnosed 3 years ago when he was 13. He had no symptoms prior to the onset of "the stomach flu" or what we thought was the flu (everyone else had it?!) He spent just shy of 6 weeks in the hospital and diarrhea was his main issue also. He was placed on prednisone short term and then on Pentasa.
I wish I had more information on the drugs your daughter was put on, but others will be by soon I am certain. I pray she continues to feel well and she gets the great Senior picture she's hoping for!!
God bless!
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Sorry you found us
But glad you did
Welcome
You can have crohn's without D.
My son does . He tends to constipate more.
You need to get copies of all biopsy reports and blood work.
Having stricture means your dd was probably sick for a while .
6-mp or Imuran is pretty standard meds.
Be prepared crohn's is a life long thing with periods of remission and flare.
Right now there is no cure so these meds are our best shot at keeping our kids guts the healthiest for as long as possible until something better comes along.
Typically the younger the age of dx ( anything under 20-24 is young) the more severe the disease course.
They will do tmpt levels prior to Imuran or 6-mp
And monitor ast /alt levels weekly at first then every two then once a month the
Every three months max.
Hopefully the meds will do there thing quickly for your daughter .
But glad you did
Welcome
You can have crohn's without D.
My son does . He tends to constipate more.
You need to get copies of all biopsy reports and blood work.
Having stricture means your dd was probably sick for a while .
6-mp or Imuran is pretty standard meds.
Be prepared crohn's is a life long thing with periods of remission and flare.
Right now there is no cure so these meds are our best shot at keeping our kids guts the healthiest for as long as possible until something better comes along.
Typically the younger the age of dx ( anything under 20-24 is young) the more severe the disease course.
They will do tmpt levels prior to Imuran or 6-mp
And monitor ast /alt levels weekly at first then every two then once a month the
Every three months max.
Hopefully the meds will do there thing quickly for your daughter .
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- 6,370
Welcome to the forum, so sorry you found a need to seek us out. Diagnosis can be completely overwhelming and it also seems to be the time when you have to make the hardest decisions.
My son was dx'ed last year, at 15. He didn't have diarrhea either he tends more toward constipation. He was put on Remicade right away and has since added methotrexate.
There are several kids that get their nutrition through EN(using the ng tube). My son has only had it once to take in the drink before the MRE when he felt really horrible. Most of the kids using it for EN take the ng tube in and out themselves. It can be done with sedation but only know a few on here who have done it with sedation, carolinalaska is one member. But it is quite disconcerting when you know your child has to do something like that without sedation in the beginning. Hopefully, she won't need the ng tube again if it really bothered her.
There is no cure for CD so I am not sure what you doc meant be "being free of it" but you do have periods of flare and remission so maybe that is what he was referring to.
We have a few parents on here that use diet to control their child's symptoms, we have a diet forum(<--click here) that you may want to browse through.
Also we have a couple of parents that use LDN as a med, I'm going to tag Jmrogers4 to explain that more, it has done well for her son.
I hope your daughter continues to feel good!!!
My son was dx'ed last year, at 15. He didn't have diarrhea either he tends more toward constipation. He was put on Remicade right away and has since added methotrexate.
There are several kids that get their nutrition through EN(using the ng tube). My son has only had it once to take in the drink before the MRE when he felt really horrible. Most of the kids using it for EN take the ng tube in and out themselves. It can be done with sedation but only know a few on here who have done it with sedation, carolinalaska is one member. But it is quite disconcerting when you know your child has to do something like that without sedation in the beginning. Hopefully, she won't need the ng tube again if it really bothered her.
There is no cure for CD so I am not sure what you doc meant be "being free of it" but you do have periods of flare and remission so maybe that is what he was referring to.
We have a few parents on here that use diet to control their child's symptoms, we have a diet forum(<--click here) that you may want to browse through.
Also we have a couple of parents that use LDN as a med, I'm going to tag Jmrogers4 to explain that more, it has done well for her son.
I hope your daughter continues to feel good!!!
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I'm so sorry that you're here in the forum, but as a newbie myself, you can't be in a better place! I've found this forum to be a sense of peace, and a major support system. You want an answer, someone here will find the answer for you. Prayers for your daughter, and for you too! An abscess was what started this all for my 15 year daughter. My advice, read as much as you can, feel at peace with whatever decision you and your daughter decide to make, and take it one day at a time.
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nolamom,
You've received some great feedback here. I can't really add much more at this point, but wanted to send my support your way.
My son is 13 years old and was dx seven years ago (he was six years old). Looking back, the change in his eating habits and constipation actually began when he was about four years old.
That is where most of my "mommy guilt" comes from...is not recognizing that there was something serious going on with him sooner. It seems like you and your daughter were "on top of it," but don't be surprised if you have some "ah-ha" moments as you learn more about the disease and reflect back on some of the odd things that you may have not thought much about at the time.
Think of Crohn's as a process not a problem. It cannot be "fixed" as simply as taking antibiotics for strep throat. Along the way you will try many different treatments and medications. Some will work better than others. Trust your instincts and be prepared to keep doing a lot of research! I have found that good research and talking to other parents on forums like this, helps me advocate better for my son.
The good news is that treatment for Crohn's has come a long, long way compared to (even) ten years ago.
Best wishes to you both.
Cheryl
You've received some great feedback here. I can't really add much more at this point, but wanted to send my support your way.
My son is 13 years old and was dx seven years ago (he was six years old). Looking back, the change in his eating habits and constipation actually began when he was about four years old.
That is where most of my "mommy guilt" comes from...is not recognizing that there was something serious going on with him sooner. It seems like you and your daughter were "on top of it," but don't be surprised if you have some "ah-ha" moments as you learn more about the disease and reflect back on some of the odd things that you may have not thought much about at the time.
Think of Crohn's as a process not a problem. It cannot be "fixed" as simply as taking antibiotics for strep throat. Along the way you will try many different treatments and medications. Some will work better than others. Trust your instincts and be prepared to keep doing a lot of research! I have found that good research and talking to other parents on forums like this, helps me advocate better for my son.
The good news is that treatment for Crohn's has come a long, long way compared to (even) ten years ago.
Best wishes to you both.
Cheryl
Catherine
Moderator
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- Jan 30, 2012
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When my daughter was first dx there was talk about a small percent to Crohn's patients under 10% that only ever they one attack. And if you could get into a strong remission with all tests clear of any signs Crohn's including two clear colonscopy, she would step down medications.
Welcome Nolamom, I'm not sure what your doc meant by that, unless he knows of some research and a cure that's coming out of FDA testing in 4 years
If it's crohns it's for life! Obviously, we all continue to hope and pray for a cure, but you gotta deal with reality as it now stands. Doesn't mean it can't be managed and life lived to the fullest!
6mp and Imuran are in the same family of meds. They are different in the way the body processes them. I don't know that I've seen anyone be put on both at the same time. But I may be wrong…and if so, someone will come along and prove it. Good luck!
If it's crohns it's for life! Obviously, we all continue to hope and pray for a cure, but you gotta deal with reality as it now stands. Doesn't mean it can't be managed and life lived to the fullest! 6mp and Imuran are in the same family of meds. They are different in the way the body processes them. I don't know that I've seen anyone be put on both at the same time. But I may be wrong…and if so, someone will come along and prove it
. Good luck!
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Hi nolamom,
It is overwhelming when you first hear of the diagnosis and must make all sorts of decisions! But, I'm glad you've found this forum - it is a wealth of information and support! I'm sorry it was your daughter's illness that brought you here though.
My son was diagnosed at 16, he'll be 19 in a couple of weeks. I've also never heard of anyone on imuran AND 6mp, perhaps the GI mentioned both as they are in the same family but I imagine your daughter will only be on one of them??
We also have only one distant relative with crohns and her symptoms were completely unlike my sons. Crohns can be located in different areas of the GI system and can affect people differently.
Once Crohns is under control, your daughter should feel symptom-free. My son used enteral nutrition to induce remission and maintain it for 1.5 years, he was then put on remicade. Once he achieved remission, it has not limited him to any degree. For the most part, other than doctor apptmts and remicade infusions, he rarely notices he has crohns.
Just want to share one 'extra' experience I've had... my son was one of the small percentage who did not develop immunity to mumps after his regular childhood MMR vaccines. Unfortunately, as we just found this out now, he cannot have a booster vaccine because of the remicade (no 'live' vaccines with remicade and I think it may be the same with imuran/6mp??). I would ask your doctor if he would agree to test for other immunity levels, not just hepatitis. As it's only a simple blood test, I wish I had known to check beforehand...
Good luck! I hope your daughter is feeling better very, very soon!!!
It is overwhelming when you first hear of the diagnosis and must make all sorts of decisions! But, I'm glad you've found this forum - it is a wealth of information and support! I'm sorry it was your daughter's illness that brought you here though.
My son was diagnosed at 16, he'll be 19 in a couple of weeks. I've also never heard of anyone on imuran AND 6mp, perhaps the GI mentioned both as they are in the same family but I imagine your daughter will only be on one of them??
We also have only one distant relative with crohns and her symptoms were completely unlike my sons. Crohns can be located in different areas of the GI system and can affect people differently.
Once Crohns is under control, your daughter should feel symptom-free. My son used enteral nutrition to induce remission and maintain it for 1.5 years, he was then put on remicade. Once he achieved remission, it has not limited him to any degree. For the most part, other than doctor apptmts and remicade infusions, he rarely notices he has crohns.
Just want to share one 'extra' experience I've had... my son was one of the small percentage who did not develop immunity to mumps after his regular childhood MMR vaccines. Unfortunately, as we just found this out now, he cannot have a booster vaccine because of the remicade (no 'live' vaccines with remicade and I think it may be the same with imuran/6mp??). I would ask your doctor if he would agree to test for other immunity levels, not just hepatitis. As it's only a simple blood test, I wish I had known to check beforehand...
Good luck! I hope your daughter is feeling better very, very soon!!!
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Welcome Nolamom,
Sorry you have had to seek us out, my son is 13 will be 14 next month and was diagnosed at 10. He had what we thought of as the swine flu (it was the big year for it) although we never had official swine flu diagnosis and it was maybe just Crohn's rearing its head as he just never seemed to get over it.
We did not have too much diarrhea either more constipation, weight loss, extreme fatigue and stomach pains.
Clash is right my son is on LDN or low dose naltrexone if you click on LDN it will take you to a wiki link which explains the drug a little more. In my non doctor only a mom terms it works by shutting off your endorphines for a short amount of time (4 hours while you are sleeping) and when the body starts producing them it makes up for that time and produces a big load of them which supposedly help the body heal itself. But then no one seems to be sure exactly how it works. That being said the drug naltrexone has been around for a long time and used in much higher dosage (50mg as opposed to 4.5mg) with very little side effects.
However there has not been a lot of research done with LDN and Crohn's, there have only been 2 trials and I believe they are working on phase III trials soon so a lot of GI's have either not heard of it, or may be unwilling to prescribe because they don't know enough about it and don't believe it works.
Jack was on Imuran for about 2 1/2 years and it worked well we just never got to 100% on it. He is currently in remission, clear scopes, showed healthy tissue, normal blood, no inflammation. I hope he stays that way forever but realistically I know that is not likely to happen.
Please fell free to ask any questions, nothing is sacred around here we regularly have poop conversations and most likely whatever it is someone has been there done that.
Sorry you have had to seek us out, my son is 13 will be 14 next month and was diagnosed at 10. He had what we thought of as the swine flu (it was the big year for it) although we never had official swine flu diagnosis and it was maybe just Crohn's rearing its head as he just never seemed to get over it.
We did not have too much diarrhea either more constipation, weight loss, extreme fatigue and stomach pains.
Clash is right my son is on LDN or low dose naltrexone if you click on LDN it will take you to a wiki link which explains the drug a little more. In my non doctor only a mom terms it works by shutting off your endorphines for a short amount of time (4 hours while you are sleeping) and when the body starts producing them it makes up for that time and produces a big load of them which supposedly help the body heal itself. But then no one seems to be sure exactly how it works. That being said the drug naltrexone has been around for a long time and used in much higher dosage (50mg as opposed to 4.5mg) with very little side effects.
However there has not been a lot of research done with LDN and Crohn's, there have only been 2 trials and I believe they are working on phase III trials soon so a lot of GI's have either not heard of it, or may be unwilling to prescribe because they don't know enough about it and don't believe it works.
Jack was on Imuran for about 2 1/2 years and it worked well we just never got to 100% on it. He is currently in remission, clear scopes, showed healthy tissue, normal blood, no inflammation. I hope he stays that way forever but realistically I know that is not likely to happen.
Please fell free to ask any questions, nothing is sacred around here we regularly have poop conversations and most likely whatever it is someone has been there done that.
Thank all of you all so much. It certainly is a lot to take in at one time! But all of the information given has really helped! I am starting a list for the doctor and will be armed with all of the helpful advice you all have given me for the next appointment!
Good luck Mom!! Go get 'em! (And keep us posted! Will keep the prayers coming!)
CarolinAlaska
Holding It Together
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Hi. Sorry I'm coming in on this late. My daughter had to have ng feedings for 5 weeks, and the insertion was a nightmare experience. Finally they did put her under to get it in. After 5 weeks she was able to remove it and does her feedings orally now. If your doctor is compassionate, they'll allow that if she ever needs it done again.
There is a lot of adjusting when you first get diagnosed or your child does. It is easy to go in denial and think your doctor must be wrong. Give yourself time to figure it all out. This forum is a great place to ask questions and learn.
My daughter is 14 and she was just diagnosed in January. Let me know if there is any questions or support I can help you with.
There is a lot of adjusting when you first get diagnosed or your child does. It is easy to go in denial and think your doctor must be wrong. Give yourself time to figure it all out. This forum is a great place to ask questions and learn.
My daughter is 14 and she was just diagnosed in January. Let me know if there is any questions or support I can help you with.
I've been off the site, so I'm late too. Welcome.
My son also has Crohn's without diarrhea, and he very rarely has constipation. Pain is his prevailing symptom, and he's small and light.
Kimberly
My son also has Crohn's without diarrhea, and he very rarely has constipation. Pain is his prevailing symptom, and he's small and light.
Kimberly
Okay - finally - she has cleared all blood tests and was put on Imuran 75 mg to start and he is tapering her off of the Entocort (6mg this month) and he added Folic Acid. She will have weekly blood tests for a month and guarding any problems we will see the Gastro again. So far she is feeling fine and learning what she can and cannot eat. So proud of the way she is handling it! Not letting it get her down! Was not at all impressed by Gastro this time. Trying to get the maintenance under control, get her in school and see how he is next appointment and then if not happy with him - will probably try to switch!
nolamom
Mom to beautiful 17 yr old daughter dx Crohn's 6/2013
Entocort 9mg daily (7/13 tapering off at 6mg now)
Imuran 75 mg (starting dose)
Folic Acid
Multi-Vitamin
Famotidine 40 mg (at bedtime) stopped 7/13
nolamom
Mom to beautiful 17 yr old daughter dx Crohn's 6/2013
Entocort 9mg daily (7/13 tapering off at 6mg now)
Imuran 75 mg (starting dose)
Folic Acid
Multi-Vitamin
Famotidine 40 mg (at bedtime) stopped 7/13
Praying that all goes well!!!
Hi Nolamom,
I was also diagnosed with Crohn's Disease when I was 17 years old. I am sorry that she had to go through hospitalization and a ng tube before being diagnosed. I am glad that her level of inflammation is small. I think your doctor is putting your daughter on appropriate medications. I was on Entocort. It is a good drug for inflammation and it is good to take while you wait for the Imuran or 6mp to work. However, you don't want her on Entocort permanently as it is a steroid (although with far less side effects than Prednisone). Your doctor will either put her on Imuran or 6mp but not both. I have been on both medications at different times of my life and I tolerated them well for the most part. While these drugs can have side effects they don't happen to everyone. Please note that it generally takes about 3 to 6 months for these drugs to build up and work so she will probably need to stay on Entocort until they work. Also, please follow your doctor's directives about getting blood work done regularly.She will need to get CBC and Liver Function blood tests done on a regular basis while on these meds. Unfortunately, there is no cure for Crohn's but many of us do well on medication. I was able to enjoy my Senior year and go to college while on meds so hopefully your daughter will do well too.
I was also diagnosed with Crohn's Disease when I was 17 years old. I am sorry that she had to go through hospitalization and a ng tube before being diagnosed. I am glad that her level of inflammation is small. I think your doctor is putting your daughter on appropriate medications. I was on Entocort. It is a good drug for inflammation and it is good to take while you wait for the Imuran or 6mp to work. However, you don't want her on Entocort permanently as it is a steroid (although with far less side effects than Prednisone). Your doctor will either put her on Imuran or 6mp but not both. I have been on both medications at different times of my life and I tolerated them well for the most part. While these drugs can have side effects they don't happen to everyone. Please note that it generally takes about 3 to 6 months for these drugs to build up and work so she will probably need to stay on Entocort until they work. Also, please follow your doctor's directives about getting blood work done regularly.She will need to get CBC and Liver Function blood tests done on a regular basis while on these meds. Unfortunately, there is no cure for Crohn's but many of us do well on medication. I was able to enjoy my Senior year and go to college while on meds so hopefully your daughter will do well too.
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