How is he doing this week, hockeymom?
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Parents of Pre-Teens and Teens with IBD
- Thread starter CrohnsIsGoingDOWN
- Start date
Hi all im new here, my son is 16 with CD. He has had 2 fistulas and one seton ring which was recently removed. we live in Brisbane but see Prof Borody in Sydney. He has been on antimap now for 10 months and this is the first time since diagnosis that his bloods are in full remission and perfect. He is on 4 antibiotics a day14 tablets a day, vit d3, scd diet and ldn as well. had limited success with cbd in the past. He was depressed but is now working and doing a diploma in youth work is a different child.
CarolinAlaska
Holding It Together
Thanks for the encouraging word.
So sorry to hear. Our 12 yr old son was just diagnosed in July. It's awful to see our kids go through this. Me.. his mom, I have it too and was diagnosed at 11. Never thought my child would get it too.
Good morning everyone,
Our son (age 13) was recently diagnosed with CD. He had developed a perianal abscess which was drained via surgery at the local ER. All went relatively well. After a series of tests, an endoscopy and colonoscopy with biopsies, it is a near certainty that CD is the culprit.
We are currently researching treatment options, even though the Ped-GI doc wants to go with Remicade right out of the gate. He indicated he observed inflammation along the entire GI tract and a small fistula at the ileum, during the scoping process. Any idea why the doc would go right to Remicade and not even mention other options? Our son is currently on 500mgs Flagyl 2xd and supplementing his low amount of food intake with Ensure and Peptamen Jr.
Our sons is small for his age, underweight and possibly puberty delayed, probably due to malabsorption. We are looking for guidance from some of you, more experienced, parents. Thank you, in advance.
Our son (age 13) was recently diagnosed with CD. He had developed a perianal abscess which was drained via surgery at the local ER. All went relatively well. After a series of tests, an endoscopy and colonoscopy with biopsies, it is a near certainty that CD is the culprit.
We are currently researching treatment options, even though the Ped-GI doc wants to go with Remicade right out of the gate. He indicated he observed inflammation along the entire GI tract and a small fistula at the ileum, during the scoping process. Any idea why the doc would go right to Remicade and not even mention other options? Our son is currently on 500mgs Flagyl 2xd and supplementing his low amount of food intake with Ensure and Peptamen Jr.
Our sons is small for his age, underweight and possibly puberty delayed, probably due to malabsorption. We are looking for guidance from some of you, more experienced, parents. Thank you, in advance.
Remicade has done better than lower tier drugs when dealing with fistulizing crohns disease. Fistulizing disease is considered severe.
Since kids tend to have more aggressive forms of CD and are in their growth period it is important to get the disease under control quickly so normal growth can occur.
Tagging my little penguin and maya142
Since kids tend to have more aggressive forms of CD and are in their growth period it is important to get the disease under control quickly so normal growth can occur.
Tagging my little penguin and maya142
.
My kiddo stated remicade at age 8
And switched to humira at age 9 due to allergic reactions
He tried all lower drugs but his disease was mild on his colonoscopy at dx
Biopsies suggested moderate but no ulcers or fistulas etc...
I can say biologics had the least amount of side effects and the list benefits for my kiddo
No wants to believe how bad it can get or what their insides look like
If it was on the outside for all to see it would be easier
Starting biologics was the best thing for my kiddo
He is now13 and his GI tract looks pristine .
As far as risk
Tylenol and abx have risk of liver failure ,Steven Johnson syndrome and even death but we give those every day to infants since the benefit far outweighs the risks
Risk of T cell lymphoma is when a child takes or has taken both
6-mp/aza with a biologics
That risk is 6 in 10000
The average person on the street without ibd has a risk of 2 in 10000
To put it all in perspective
Risk wise
Death risk for kids under age 14 in US
By car 1 in 250
By drowning 1in 1000
So we takes risks everyday but the benefits far outweigh
The risks
When a doc prescribes a med it's because they feel the benefits far outweigh the risks
T cell lymphoma is less of risk if the child is only on biologics without having tried immunosuppressants
I know it's hard
It took a long time to come to grips with how serious this disease really is and that meds are needed
Also that the meds seem very scary but getting things under control and having a happy hero wing kid makes it all worth it
And switched to humira at age 9 due to allergic reactions
He tried all lower drugs but his disease was mild on his colonoscopy at dx
Biopsies suggested moderate but no ulcers or fistulas etc...
I can say biologics had the least amount of side effects and the list benefits for my kiddo
No wants to believe how bad it can get or what their insides look like
If it was on the outside for all to see it would be easier
Starting biologics was the best thing for my kiddo
He is now13 and his GI tract looks pristine .
As far as risk
Tylenol and abx have risk of liver failure ,Steven Johnson syndrome and even death but we give those every day to infants since the benefit far outweighs the risks
Risk of T cell lymphoma is when a child takes or has taken both
6-mp/aza with a biologics
That risk is 6 in 10000
The average person on the street without ibd has a risk of 2 in 10000
To put it all in perspective
Risk wise
Death risk for kids under age 14 in US
By car 1 in 250
By drowning 1in 1000
So we takes risks everyday but the benefits far outweigh
The risks
When a doc prescribes a med it's because they feel the benefits far outweigh the risks
T cell lymphoma is less of risk if the child is only on biologics without having tried immunosuppressants
I know it's hard
It took a long time to come to grips with how serious this disease really is and that meds are needed
Also that the meds seem very scary but getting things under control and having a happy hero wing kid makes it all worth it
Thank you all for the replies. Wasn't sure where best to post, so I placed my questions in a couple of threads, then decided to just create my own. It does seem as if "biologics" such as Remicade are most effective and generally bring about remission more quickly. I believe the dr wants to get things under control quickly, so as to avoid further complications and possible surgery.
Thank you and bless you for the information they started my son immediately on the Remicade also unfortunately yesterday I had such a bad reaction I guess that's why humira is next. Sorry to ask but when you say Sorry to ask but when you say cbd. Do you mean the medical THC? I was curious about that
Oh and I guess also yes they started him immediately on Remicade unfortunately he cannot take I wasn't sure if it was because of insurance or because it was the best medicine but now they're pushing for Humira. I've been divorced for 10 years and my ex-husband has primary custody he and is not the most friendly and I received very little information although this has just happened and I have an appointment with his doctor myself the last few nights have been rough Lack of information is fair my son is strong in our family has faith we can make it through this as long as I believe in what we're doing in some positive testimony, CBD was something I was curious about If it's the same thing I'm thinking about which was just passed here in Florida
CarolinAlaska
Holding It Together
Cassiep, I think you referred to cbd...
Is he interested in college there? I'm in the process of doing the same thing but then Jack's made a college decision so now I'm trying to get the medical all in order. Luckily he chose in-state so we have an appt. with GI on the 6th so I was going to ask him along with all the papers I have for him to sign (release from disability office, letter to disability office, letter about housing, crohn's scholarship papers). I think probably a call to insurance also. You know me I want to have everything set as soon as possible my own little control issues with this disease since I can't control anything else
We started a Facebook group for us parents who are dealing with kids transitioning to adulthood and college. I want to invite you all to join us,
https://www.facebook.com/groups/1470097109683916/
https://www.facebook.com/groups/1470097109683916/
I wanted to post an update; I haven't posted on here for awhile.
DD is 16 and in 11th grade and her IBD has been pretty treatment resistant. She's now on Remicade, MTX and Uceris and may be making a change; we're waiting on the remicade levels. She has consistently had a lot of morning pain and nausea and episodic flaring. We had difficulty with her school district - we had a 504 that didn't go far enough and then they fought us on an IEP and we had to hire lawyers to get one. In any case, it became apparent she would do better in another setting and she is doing great in cyber school. She's still connected to friends through social and volunteer activities when she's well. She even went to her (former) high school prom!
What we thought was her latest flare turned out to be c diff and she is now on vancomycin. :stinks:
She is starting to look at colleges and knows that one of the criteria needs to be access to a top-notch hospital.
This continues to be a roller-coaster and it would just be great to get her onto meds that keep her in remission!
DD is 16 and in 11th grade and her IBD has been pretty treatment resistant. She's now on Remicade, MTX and Uceris and may be making a change; we're waiting on the remicade levels. She has consistently had a lot of morning pain and nausea and episodic flaring. We had difficulty with her school district - we had a 504 that didn't go far enough and then they fought us on an IEP and we had to hire lawyers to get one. In any case, it became apparent she would do better in another setting and she is doing great in cyber school. She's still connected to friends through social and volunteer activities when she's well. She even went to her (former) high school prom!
What we thought was her latest flare turned out to be c diff and she is now on vancomycin. :stinks:
She is starting to look at colleges and knows that one of the criteria needs to be access to a top-notch hospital.
This continues to be a roller-coaster and it would just be great to get her onto meds that keep her in remission!
Thanks for the update--sounds like things haven't been easy this year. I'm sorry to hear about the flaring and c diff, and also about your difficulties with her school. Glad to hear that the online school is working out, and I really hope you can find a treatment that works well for her. Hope that the c diff is gone soon too. Hang in there!
Thanks for updating Katrina9, the college search can be a little trickier with IBD my son is about to graduate from high school in 2 months (UGH! can't quite believe it) and we certainly checked hospital location and talked to the disability offices at each one. He has made his college choice in fact we go out for early registration and to pick classes in a week. We will also be visiting the hospital where he will receive his infusions. It's an 8 minute bus ride from campus and the bus leaves every 1/2 hour. While it wasn't the deciding factor in choosing a college we did cross some off the list due to greater difficulty in getting to an infusion location.
I've talked to a GI office out there, though he will continue to see his GI here in town (college is 3 hours away). We will just schedule check up appointments during school breaks but he is good to go at the GI office in town for emergencies.
It's an exciting time but I have to say his two top choices were because how helpful the people in the disability office were I guess he figured if he really had problems they would be easier to work with than the one that kind of blew us off and basically said if you decide to go here than we will set up a meeting.
Good luck in the college search and glad the cyber school is working out for her.
I've talked to a GI office out there, though he will continue to see his GI here in town (college is 3 hours away). We will just schedule check up appointments during school breaks but he is good to go at the GI office in town for emergencies.
It's an exciting time but I have to say his two top choices were because how helpful the people in the disability office were I guess he figured if he really had problems they would be easier to work with than the one that kind of blew us off and basically said if you decide to go here than we will set up a meeting.
Good luck in the college search and glad the cyber school is working out for her.
Katrina9 my son is in 6th grade and has missed 3 months of school. I'm curious if this happened in high school how on-line/cyber school can work with College applications and choices. Right now my son has a 504 and they send the work via friends or computer he keeps up the best he can, but it is stressful. He is on remicade monthly methotrexate and uceris and just came up with a high calprotection level. His pain has been so bad at times he can't walk and nothing has worked he's also been seen by pain clinic. I appreciate advice on cyber school in case we need it in the future even though I pray daily he will not have this pain forever. Thanks in advance for your help!
Has he been on een(formula only -no food)
It is as effective as steriods without the side effects
Some use an ng tube
Others like my kiddo drink it orally
Ds is 13 and just started a 8 week course last week
Good luck
It is as effective as steriods without the side effects
Some use an ng tube
Others like my kiddo drink it orally
Ds is 13 and just started a 8 week course last week
Good luck
I'm so sorry your son is experiencing pain and hope his docs can find something to help.
My daughter was diagnosed at the beginning of 10th grade and missed 90 of 180 instructional days that year. We did the best we could with her 504 plan. She managed to finish 3 courses with a B average, after dropping two classes. While some of her individual teachers were helpful and sympathetic, we had a very difficult time with members of the school and district administration (including the nurse) who questioned why we couldn't just make her go to school by 7:20 AM everyday. Their focus was getting her to show up - even if she went home after that - so they could count her as having attended. If she wasn't there, we had to provide a signed doctor's note for each day she missed or was late.
By the beginning of 11th grade we did not see any other option than cyber school because it was clear that our daughter was still not in remission and was going to continue to miss a lot of school, so, even with the accommodations the school provided - and we paid lawyers to help us secure a more rigorous IEP - she was not going to be able to get an education or keep up.
I'm so glad we made the change. She can sleep in, get up and do all her work - it usually takes her 3-4 hours (and then there isn't homework) - and interact with her teachers in real time. She is getting A's in six classes, including Honors. She will take one class this summer and be on track to fulfill all her HS requirements. She can do work from the hospital - if she is there for an infusion or is inpatient.
She attends a state approved cyber charter school so it is a free education. Working with them on the 504 was very easy and was accomplished in a 20 minute meeting.
Regarding college, I know that the graduating classes from this school attend good colleges. Students go this cyber school for many reasons - including physical and emotional health - and also because some are competitive athletes and performers who need the flexible schedule.
My daughter will be applying to colleges in the fall and so we are hoping that attending a cyber school in no way hinders her. She is taking honors classes and next year plans to take AP courses as well. For us, this has been a really great option.
While I am finally quite clear that my daughter's symptoms - pain, nausea - and worse when she flares - are due to the IBD - I know that the stress of being at war with the school - and us at times pushing her to go when she was ill just to appease them - could not have helped her.
Feel free to message me if I can answer any other questions.
Kathy
My daughter was diagnosed at the beginning of 10th grade and missed 90 of 180 instructional days that year. We did the best we could with her 504 plan. She managed to finish 3 courses with a B average, after dropping two classes. While some of her individual teachers were helpful and sympathetic, we had a very difficult time with members of the school and district administration (including the nurse) who questioned why we couldn't just make her go to school by 7:20 AM everyday. Their focus was getting her to show up - even if she went home after that - so they could count her as having attended. If she wasn't there, we had to provide a signed doctor's note for each day she missed or was late.
By the beginning of 11th grade we did not see any other option than cyber school because it was clear that our daughter was still not in remission and was going to continue to miss a lot of school, so, even with the accommodations the school provided - and we paid lawyers to help us secure a more rigorous IEP - she was not going to be able to get an education or keep up.
I'm so glad we made the change. She can sleep in, get up and do all her work - it usually takes her 3-4 hours (and then there isn't homework) - and interact with her teachers in real time. She is getting A's in six classes, including Honors. She will take one class this summer and be on track to fulfill all her HS requirements. She can do work from the hospital - if she is there for an infusion or is inpatient.
She attends a state approved cyber charter school so it is a free education. Working with them on the 504 was very easy and was accomplished in a 20 minute meeting.
Regarding college, I know that the graduating classes from this school attend good colleges. Students go this cyber school for many reasons - including physical and emotional health - and also because some are competitive athletes and performers who need the flexible schedule.
My daughter will be applying to colleges in the fall and so we are hoping that attending a cyber school in no way hinders her. She is taking honors classes and next year plans to take AP courses as well. For us, this has been a really great option.
While I am finally quite clear that my daughter's symptoms - pain, nausea - and worse when she flares - are due to the IBD - I know that the stress of being at war with the school - and us at times pushing her to go when she was ill just to appease them - could not have helped her.
Feel free to message me if I can answer any other questions.
Kathy
Thank you so much! It good to know the options. I pray every day my son is in school or on the baseball field because then I will know he's not in pain. He's getting an endoscopy and sigmoidoscopy Thursday so hopefully we will get answers. He's so sad and angry at this pain it's so hard to deal with he's now on month four of no school. I am getting sick over this too because we've been to the doctor he's on all these meds and the pain clinic and no resolution. Every time they try to say it's not fully real pain or something not sure they find something else. He's so depressed won't see his friends too much. Just so sad. I hope your daughter is doing well.
Is your son seeing a psychologist Faithsg? If his scopes don't show anything, then it might be worth also looking into one of the pediatric pain programs. They have inpatient programs for kids with chronic pain that are just in so much pain that they're unable to function. My daughter did one and it really changed her life.
My son was been seen by the pain clinic two weeks ago and they felt that his crohns wasn't resolved and he has EOE not quite resolved. They gave him meds which haven't worked yet and some physical therapy home program and a tens machine. He was scoped yesterday and it was an endoscopy and sigmoidoscopy the area of inflammation was still inflamed the ten to 15 inched from the rectum up in the sigmoid colon, we don't have final biopsy results but that area did not look better in fact it looked worse to me which means the uceris didn't work. The remicade and methotrexate are not hitting that area. My son is very resistant to trying a rectal steroid but that may be the next route. There was also an area of the stomach which looked weird, but we won't know anything for sure until the biopsies come in. My son is very sad and depressed from being out of school, sports and he won't see friends or go many places. The worse he gets I understand his feelings we are constantly getting medicine and procedures and seems like nothing works are all. I am really sad too this child was happy and in remission from summer until the new year. He was running around playing sports having sleepovers and riding a bike now it hurts when he walks a lot and the thought of walking around school seems hard for him. This area of inflammation causes him so much pain all the time he can't function. Thanks for your help and support! Any thoughts on helping this specific area of the colon it seems like a hard to treat area.
My kiddo was REALLY against enemas and suppositories. She finally agreed after a LOT of arguing - mostly because she had painful bleeding fissures and each BM was torture. She was put on hydrocortisone suppositories, which worked in less than a week!! It was like magic!
She has also done hydrocortisone enemas in the past, which also worked very well.
It might help to have his GI to tell him how much they will help. Also point out that if he wants the pain to get better, he will have to use the prescribed treatment!
It is very tough with teenagers - they think they know best. Sending hugs!
She has also done hydrocortisone enemas in the past, which also worked very well.
It might help to have his GI to tell him how much they will help. Also point out that if he wants the pain to get better, he will have to use the prescribed treatment!
It is very tough with teenagers - they think they know best. Sending hugs!
Hi everyone, we live in London and my daughter is 12 years old, will be 13 in May and she is currently having a number of tests to see what is going on. Booked in for an Endoscopy and Colonscopy.
She started to have stomach pain in January 2017 and they said she had pulled a stomach muscle as she dances alot, but it did not get better.
So after several blood tests and visits to the GP, she was asked to do a stool sample, it was then I discovered that she had very soft stools with blood which she commented she thought was quite normal and it had been like that for around 2/3 months.
When we sat her down and spoke with her, she explained that: -
- Her stomach pain was constant with bad cramps
- Her mouth was hurting and on looking she had sores on the back of tongue and throat
- She was bloated
We went straight to the doctors on the first working day and was immediately sent to see a consultant that day who referred her to Royal London (Barts) and we see the consultant this week after a 1 week wait.
She now goes in, in May for the tests but although she has not ruled anything out she is leaning towards an IBS with an allergy and maybe polyps in the bowel causing the bleeding.
She started to have stomach pain in January 2017 and they said she had pulled a stomach muscle as she dances alot, but it did not get better.
So after several blood tests and visits to the GP, she was asked to do a stool sample, it was then I discovered that she had very soft stools with blood which she commented she thought was quite normal and it had been like that for around 2/3 months.
When we sat her down and spoke with her, she explained that: -
- Her stomach pain was constant with bad cramps
- Her mouth was hurting and on looking she had sores on the back of tongue and throat
- She was bloated
We went straight to the doctors on the first working day and was immediately sent to see a consultant that day who referred her to Royal London (Barts) and we see the consultant this week after a 1 week wait.
She now goes in, in May for the tests but although she has not ruled anything out she is leaning towards an IBS with an allergy and maybe polyps in the bowel causing the bleeding.
Ibs does not cause bleeding
Ibs does not do damage
Ibd does cause bleeding and diarrhea
Ibs does not do damage
Ibd does cause bleeding and diarrhea
She said that the bleeding could be the polyps in the bowel bleeding. I am not convinced but I will wait to after the test results.
Anyone on Pentasa? I am wondering what suppliments I should put my 18 son on the ease the side effects. He had Crohn's since 2011 and has done fine with diet. But he will be going off to college and we think it may be time to put him on medicine. More to the story but dont want to be too wordie. So any suggestions on the vitamins?
Pentasa is NOT approved as a monotherapy for Crohns
It only treats the top layer on the intestine
Crohns affects through all layers
Most GI equate pentasa to giving aspirin for a brain tumor
Not going to hurt too much but not going to help either
What side effects does your child have on pentasa ?
The list of POSSIBLE side effects are just possible not probable
Ds took it and it did absolutely nothing
It only treats the top layer on the intestine
Crohns affects through all layers
Most GI equate pentasa to giving aspirin for a brain tumor
Not going to hurt too much but not going to help either
What side effects does your child have on pentasa ?
The list of POSSIBLE side effects are just possible not probable
Ds took it and it did absolutely nothing
My daughter had no side effects with Pentasa. But it didn't really help either - when we discontinued it, absolutely nothing happened.
Generally immunomodulators or biologics are necessary to control Crohn's. Pentasa and other 5-ASAs work in UC, but not in Crohn's because in Crohn's the inflammation is "transmural" - through all the layers of the intestine. In UC, it's just the top layer, so 5-ASAs sometimes work.
Generally immunomodulators or biologics are necessary to control Crohn's. Pentasa and other 5-ASAs work in UC, but not in Crohn's because in Crohn's the inflammation is "transmural" - through all the layers of the intestine. In UC, it's just the top layer, so 5-ASAs sometimes work.
My son is 13 and was diagnosed w Crohns a year ago. Did you find out what it was?
Hi and welcome Toots. Is she on any other meds? Steroids? Those should help with the pain. Has she started a maintenance medication - for example, something like Azathioprine or 6MP?
A formula only diet (EEN) can also help a lot with the pain. I will tag some other parents:
my little penguin
pdx
Farmwife
Tesscorm
Clash
Pilgrim
A formula only diet (EEN) can also help a lot with the pain. I will tag some other parents:
my little penguin
pdx
Farmwife
Tesscorm
Clash
Pilgrim
Hi there, and welcome. I know we have a few members from Florida, but I don't know what county they're in. You may want to start a new thread with your question so that it stands out more. Also, if you have a local chapter of the CCFA (Crohn's and Colitis Foundation), they may be able to connect you with some local families who can give you more advice about local doctors.
How is your daughter doing right now? My daughter was also diagnosed at 12; she's 15 now and doing pretty well.
Sorry that your daughter is so much pain. As Maya mentioned above, EEN can help a lot with pain while you wait for other meds to work. My daughter was on EEN for about 2 months, and her severe abdominal pain subsided within a few days of starting. My daughter was very opposed to the idea of trying it at first (especially since she used an NG-tube), but it turned out to be easier than she thought it would be.
Good luck. Hope she feels better very soon.
HI, I am new to the forum. My 12 year old son was diagnosed with fistulizing crohn's 3 years ago. He was on Remicade every 6 weeks for 1 1/2 years but unfortunately it was not the magic treatment it is for so many, but he felt pretty good. When the fistula had not closed the GI took him off and tried Humira (on which he was so sick! high fevers and severe crohns symptoms) then 6mp (again no relief and sick all of the time) doctor put him back on Remicade (thankfully he had not developed antibodies) and he has been on it at maximum dose every 4 weeks and methotrexate and folic acid for a year. Not only has his fistula not healed, a recent MRI reveals a small second fistula. Overall we are VERY thankful that he feels good most of the time despite his disease being so bad - he leads a normal and full life! All of his inflammatory markers always remain extremely elevated. Every year we see the surgeon about a possible Seton but he says since the fistula is not draining or bothering him the surgery could be more painful and if we could just get him into remission the fistula would heal.
He has a colonscopy this Thursday and his GI is pushing to change medication. She wants to combine 6mp and the Remicade, which we won't do because of the heightened risk of cancer in pediatric boys so her second choice is Stelara or Entyvio. We are VERY reluctant to switch because at least on Remicade he has maintained a good quality of life (able to attend school and play some sports and perform in acting/plays) even though the disease is not under control. Based on how sick he was off Remicade 70% relief seems better than the other possibility. We are also concerned because Stelara and Entyvio have not yet been approved for use in pediatric and thus the risks are not known. (let alone the possible costs) Please respond if any of you or your children have had similar experiences or have switched from Remicade to Stelara or Entyvio? THanks, #Sam's mom .
He has a colonscopy this Thursday and his GI is pushing to change medication. She wants to combine 6mp and the Remicade, which we won't do because of the heightened risk of cancer in pediatric boys so her second choice is Stelara or Entyvio. We are VERY reluctant to switch because at least on Remicade he has maintained a good quality of life (able to attend school and play some sports and perform in acting/plays) even though the disease is not under control. Based on how sick he was off Remicade 70% relief seems better than the other possibility. We are also concerned because Stelara and Entyvio have not yet been approved for use in pediatric and thus the risks are not known. (let alone the possible costs) Please respond if any of you or your children have had similar experiences or have switched from Remicade to Stelara or Entyvio? THanks, #Sam's mom .
it must suck being a 17 year old with a chronic illness...
but he seems to be handling it better than me and my husband.
I'm glad to be part of this chat for added supports.
thank you
My 17 year old son was diagnosed with probable UC/ but can't rule out Crohn's yet- so they are calling it unspecified. Its been a tough year with many meds,
currently we are transitioning from everything he is on orally and rectally to remicade infusions. Complicating it all is a recurrent c-diff infection confusing the response.
He is currently in the induction phase of remicade and I don't know if he is improving, or whether its the antibiotics or steriods.
its all confusing
but he seems to be handling it better than me and my husband.
I'm glad to be part of this chat for added supports.
thank you
My 17 year old son was diagnosed with probable UC/ but can't rule out Crohn's yet- so they are calling it unspecified. Its been a tough year with many meds,
currently we are transitioning from everything he is on orally and rectally to remicade infusions. Complicating it all is a recurrent c-diff infection confusing the response.
He is currently in the induction phase of remicade and I don't know if he is improving, or whether its the antibiotics or steriods.
its all confusing
crohnsinct
Well-known member
me to!
Hello everyone!
I am a newbie with an undiagnosed 11yo. I am a wreck over the evening call we got a week and a half ago with his alarming inflammation test score. He is scheduled for his first endoscopy and colonoscopy in mid-April. They are expecting UC, Crohn's, or unlikely but possible a eosinophilic condition. My son has had life long eczema, food allergies, asthma, and hives from environmental things. We dealt with mild adhd turning into a real problem in 5th grade when he developed OCD. And for the past year a host of digestive troubles that have lead us to where we are now.
I am sure you have all been here for the wait. Wait to see what he may have, wait to see if there is improvement. I am feeling so overwhelmed. We have a distant family history of ulcerative colitis, both dh's grandmothers and my grandfather.
We are also waiting for allergy test results. But those do not highlight digestive eosinophilic respsonses just more things we will have to watch for. Currently he avoids shellfish and peas.
Anyway. I am happy to join here. This is a tough age group to deal with differences. He has been lammenting a lot about having to go to the bathroom at school twice a day for 20 min or more.
I am a newbie with an undiagnosed 11yo. I am a wreck over the evening call we got a week and a half ago with his alarming inflammation test score. He is scheduled for his first endoscopy and colonoscopy in mid-April. They are expecting UC, Crohn's, or unlikely but possible a eosinophilic condition. My son has had life long eczema, food allergies, asthma, and hives from environmental things. We dealt with mild adhd turning into a real problem in 5th grade when he developed OCD. And for the past year a host of digestive troubles that have lead us to where we are now.
I am sure you have all been here for the wait. Wait to see what he may have, wait to see if there is improvement. I am feeling so overwhelmed. We have a distant family history of ulcerative colitis, both dh's grandmothers and my grandfather.
We are also waiting for allergy test results. But those do not highlight digestive eosinophilic respsonses just more things we will have to watch for. Currently he avoids shellfish and peas.
Anyway. I am happy to join here. This is a tough age group to deal with differences. He has been lammenting a lot about having to go to the bathroom at school twice a day for 20 min or more.
Yes, the waiting is so hard! My daughter started having digestive symptoms at age 11 too, and it took us almost a year to get a diagnosis, and that was only after she got really sick. I hope that your son's condition stays stable until April, and that the scopes give you some answers. You may also want to ask about some kind of imaging for his small intestine, such as an MRE or pillcam, since sometimes Crohn's only shows up there.
Hang in there!
Hang in there!
Welcome, @Mom2Eli. My son had been showing symptoms over the years and had the flare that brought us to a diagnosis 2.5 yrs ago at age 11. He was on a low residue diet until he achieved remission with Remicade for severe ilial Crohn's.
Hang in there, and manage the best you can. That includes everyone's mental health. It's terrible to have a suffering kiddo but thankfully IBD itself isn't fatal, so until you get the right diagnosis and treatment, the key is getting them nutrition, and balancing giving them emotional comfort and helping them learn resilience.
Hang in there, and manage the best you can. That includes everyone's mental health. It's terrible to have a suffering kiddo but thankfully IBD itself isn't fatal, so until you get the right diagnosis and treatment, the key is getting them nutrition, and balancing giving them emotional comfort and helping them learn resilience.