Hello. My wife and I were told yesterday that our son has Crohn's. The doctor is going to see how severe with upper and colonoscopy. In the past year my son lost 15lbs. Doctors originally said is was lactose intolerance. But my wife and I did not believe that to make sense. Our son loved milk and cereal and this happened all of a sudden. He would have diarrhea and cramping. We tried to connect it to certain foods. But nothing was obvious. Recently he had an abscess. In which we were referred to a gastro doc. She scheduled lots of tests. All his blood work was normal. But the fecal test was abnormal. The severity of his flares I believe are mild. He will go 4-6 weeks with no issues. Then he will have a bout where he gets cramps and diarrhea. Rarely painful. This last sometimes minutes to hours. He has never had bleeding. 95%of the time it does not affect his sports or schooling. The gastro doctor has already gave us literature on crohn's and support group info. She went over meds. She recommends Humira. My wife and I prefer natural and the last resort is meds. We do notice my son is falling behind in growth. I believe natural could help with flare ups. But I do not know if it would help his development. Does anybody else who has experienced this with a teenage boy have advice? Just like all parents we want the best for our child. Not only now but long term. With proper diet and meds can this be controlled? Or will this disease do as it wants and go from mild to life threatening at any moment? Sorry so long. Thanks
14yo son humira or natural?
- Thread starter emmac13
- Start date
Help Support Crohn's Disease Forum:
- Joined
- Jun 5, 2012
- Messages
- 4,029
Sorry you have had to join the club, my son is also 14 and was diagnosed at 10 and you have pretty much described my son and our journey. We now joke (4 years later) about his normal bloods. Fecal test has become our go to marker for inflammation.
One of the biggest concerns is simmering ongoing inflammation which can cause damage that can not be re-paired only removed. Lack of growth is a huge indicator of simmering inflammation.
It can indeed go from mild to life threatening if left untreated or undertreated. Dustykat's son, I believe went from mild to surgery within a matter of weeks (that tagged her so she should chime in and correct me if I'm wrong).
There has been quite a bit of research about hitting the Crohn's fast and hard at diagnosis has proven to be beneficial to long term outcome (The top down approach)
as opposed to bottom up approach starting with milder drug and working your way up as/if needed. We did the bottom up approach and while it controlled many of his symptoms and he did not get worse. He did not grow for a majority of the past 4 years. He started out at 4'10 and is now 5'2" so roughly an inch a year when most kids are growing 3-4" a year at that age.
We have recently started remicade and he is already showing significant improvement and while he would tell you he has almost always felt fine, he has "never felt better".
The drugs are scary and we have all struggled with the decisions of meds/no meds, this med/that med once they are working and he is able to participate in sports/school 100% of the time they don't seem so bad.
Have a look around, read other's stories with one caveat at lot of the time people post when things are at there worst and when things are good they are off enjoying themselves and life.
Please feel free to ask question, there are a lot of truly amazing people on here who have done loads of research.
One of the biggest concerns is simmering ongoing inflammation which can cause damage that can not be re-paired only removed. Lack of growth is a huge indicator of simmering inflammation.
It can indeed go from mild to life threatening if left untreated or undertreated. Dustykat's son, I believe went from mild to surgery within a matter of weeks (that tagged her so she should chime in and correct me if I'm wrong).
There has been quite a bit of research about hitting the Crohn's fast and hard at diagnosis has proven to be beneficial to long term outcome (The top down approach)
as opposed to bottom up approach starting with milder drug and working your way up as/if needed. We did the bottom up approach and while it controlled many of his symptoms and he did not get worse. He did not grow for a majority of the past 4 years. He started out at 4'10 and is now 5'2" so roughly an inch a year when most kids are growing 3-4" a year at that age.
We have recently started remicade and he is already showing significant improvement and while he would tell you he has almost always felt fine, he has "never felt better".
The drugs are scary and we have all struggled with the decisions of meds/no meds, this med/that med once they are working and he is able to participate in sports/school 100% of the time they don't seem so bad.
Have a look around, read other's stories with one caveat at lot of the time people post when things are at there worst and when things are good they are off enjoying themselves and life.
Please feel free to ask question, there are a lot of truly amazing people on here who have done loads of research.
- Joined
- Apr 15, 2012
- Messages
- 14,792
They majority of kids are considered moderate disease once there is delayed growth.
Not seeing the damage caused on the inside makes meds hard to "take" as a parent.
The highest success rate is using step down therapy ( biologics like humira within the first three months to year of dx).
That said every kid is different on some find success with immunosuppressants such as 6-mp or Imuran.
The goal is to get the intestine healthy again and keep there as long as possible .
In the large majority of kiddos this will mean drugs such as immunosuppresants or biologics.
Diet alone does not cause a flare but can make a flare worse.
Formula only ( no foods ) EEN can be used to induce remission but a maintence med( 6-mp
, humira )needs to be started since the disease comes back once food is introduced .
Check out our ped research section
Lots if papers there on the drugs
It is not easy for the parents but the kids tend to deal with the while thing better .
Not seeing the damage caused on the inside makes meds hard to "take" as a parent.
The highest success rate is using step down therapy ( biologics like humira within the first three months to year of dx).
That said every kid is different on some find success with immunosuppressants such as 6-mp or Imuran.
The goal is to get the intestine healthy again and keep there as long as possible .
In the large majority of kiddos this will mean drugs such as immunosuppresants or biologics.
Diet alone does not cause a flare but can make a flare worse.
Formula only ( no foods ) EEN can be used to induce remission but a maintence med( 6-mp
, humira )needs to be started since the disease comes back once food is introduced .
Check out our ped research section
Lots if papers there on the drugs
It is not easy for the parents but the kids tend to deal with the while thing better .
Thank You. This has clear things up for me. In other words, this has been going on for awhile. We are just noticing it. And it will continue unless meds are involved. Lack of growth is a sign he has some damage. And even though he is fine for 4-6 weeks this does not mean his GI is healthy. Meds are best way to get him healthy again. Our gastro doc prefers biologics like Humira. What can be expected for the next year? My son was going to play travel baseball. The doc mentioned more tests to find correct dosing. Will this disease be very consuming of his life in the beginning of treatment? Thank you.
crohnsinct
Well-known member
- Joined
- Mar 10, 2012
- Messages
- 6,469
My daughter also felt fine for two years. The only indicator that anything was wrong was slow growth and minor fatigue. One day she got diarrhea and two weeks later my daughter was in the hospital malnourished, severely dehydrated and receiving blood transfusions. Undertreated or untreated disease can wreck havoc. Unfortunately, we often can't see the damage and results of active disease. Many kids like your son return perfect bloods and only fecal testing shows disease activity.
I am a very holistic person and HATED jumping to the biologics so fast. I did much, much research and diet did not cure the disease nor did it cause it. Diet will help make your child feel better during a flare and will also help support good health overall. My daughter did Exclusive Enteral Nutrition to get her to remission. However EEN only works for as long as the child is on it. Once they come off, it is only a matter of time before the disease kicks up again, often doing its damage silently. For this reason a maintenance med is needed.
As JM stated, there is evidence that the quicker CD is controlled in kids the less likely they will need surgery down the road. This would be the top down approach your doc seems to be suggesting.
We have had excellent success with Remicade (another biologic) and using an anti inflammation diet. My daughter was diagnosed two years ago at 12 and after 6 months was declared in remission where she has stayed ever since.
Be kind to yourself and take your time to research and ask your doc many questions. Your family has to be totally comfortable with whatever decision you make. I hope the colonoscopy gives you good information with which to make your decision.
I am a very holistic person and HATED jumping to the biologics so fast. I did much, much research and diet did not cure the disease nor did it cause it. Diet will help make your child feel better during a flare and will also help support good health overall. My daughter did Exclusive Enteral Nutrition to get her to remission. However EEN only works for as long as the child is on it. Once they come off, it is only a matter of time before the disease kicks up again, often doing its damage silently. For this reason a maintenance med is needed.
As JM stated, there is evidence that the quicker CD is controlled in kids the less likely they will need surgery down the road. This would be the top down approach your doc seems to be suggesting.
We have had excellent success with Remicade (another biologic) and using an anti inflammation diet. My daughter was diagnosed two years ago at 12 and after 6 months was declared in remission where she has stayed ever since.
Be kind to yourself and take your time to research and ask your doc many questions. Your family has to be totally comfortable with whatever decision you make. I hope the colonoscopy gives you good information with which to make your decision.
- Joined
- Feb 9, 2012
- Messages
- 968
Enteral nutrition is a great addition to any treatment plan, popular in Canada, Japan and Europe not so widely used in USA (due to patient noncompliance). Violet's been on it all 5.5 years of being sick, Tesscorm on this board has a son diagnosed in his teens who used it for years also. Most use it short term, some (few) long term, but it is great for undernutrition (due to malabsorption) issues.
It was Violet's sole treatment for the first three years.
It was Violet's sole treatment for the first three years.
- Joined
- Jun 5, 2012
- Messages
- 4,029
My son does travel baseball and yours should be able to continue especially as Humira is a shot you can take with you. Not sure where you are located but labs to find correct dosage are usually just blood draws. Our hospital lab is open from 6am-8am and on Saturdays, it usually takes us about 15 minutes in and out to have them drawn (1/2 hour if it is really busy). We had labs done after school and still made it to baseball game/practice with no problems. The other tests scopes, MRE, Pill cam that can be done are usually not done over and over in a short amount of time but scopes is generally a 2 day process 1 for clean out and 1 for scopes (although we usually have them done first thing in the morning and are done by noon), MRE is a couple hour process.
So it does not have to interfere with baseball.
The disease may be more consuming for you, the kids seem pretty resilient. I spent a lot of time researching, worrying, etc.
Jack was diagnosed 4 years ago on March 2nd. He had his scopes done on Tuesday (March 2nd) and was trying out for the baseball team that weekend. He played in every game and made every practice, their team ended up playing in the championship game and while they did not win, he had a great season.
He had a signal with his coach just in case he ever had to leave the field immediately (it never happened).
Long and short Jack carried on as if nothing was going on. We did however have to change his dugout baseball treats as all the kids were eating sunflower seeds and those are a no-no but other than that all was normal.
So it does not have to interfere with baseball.
The disease may be more consuming for you, the kids seem pretty resilient. I spent a lot of time researching, worrying, etc.
Jack was diagnosed 4 years ago on March 2nd. He had his scopes done on Tuesday (March 2nd) and was trying out for the baseball team that weekend. He played in every game and made every practice, their team ended up playing in the championship game and while they did not win, he had a great season.
He had a signal with his coach just in case he ever had to leave the field immediately (it never happened).
Long and short Jack carried on as if nothing was going on. We did however have to change his dugout baseball treats as all the kids were eating sunflower seeds and those are a no-no but other than that all was normal.
crohnsinct
Well-known member
- Joined
- Mar 10, 2012
- Messages
- 6,469
O is a on the high school track and swim team and swims for a club team. She practices two hours after school, comes home does homework and goes to another two hours of practice for her club team.
The key is to find the treatment that will work. It can sometimes take a while. For us we hit upon it in 6 months and we have never looked back. We are well aware a flare can strike at any time but two years in we are hoping they will be few and far between.
Are you in the U.S.? You may want to get a 504 plan for him. These are accomodations that might be needed due to his illness. Unlimited bathroom breaks, stop the clock testing for bathroom breaks, self monitoring for P.E. participation etc. The CCFA has an excellent brochure that explains to school staff what CD is and what they should expect and keep an eye out for. Also lists typical accomodations.
One thing that it doesn't mention is with athletics many schools have a policy where you have to attend so many practices so many days prior to a game or tournament. Or if you miss any school the day of a game you can't play. For my daughter we got an exception for dr's appointments and procedures so she could compete. However, if she misses school because of CD complaints then she may not compete...makes sense.
The key is to find the treatment that will work. It can sometimes take a while. For us we hit upon it in 6 months and we have never looked back. We are well aware a flare can strike at any time but two years in we are hoping they will be few and far between.
Are you in the U.S.? You may want to get a 504 plan for him. These are accomodations that might be needed due to his illness. Unlimited bathroom breaks, stop the clock testing for bathroom breaks, self monitoring for P.E. participation etc. The CCFA has an excellent brochure that explains to school staff what CD is and what they should expect and keep an eye out for. Also lists typical accomodations.
One thing that it doesn't mention is with athletics many schools have a policy where you have to attend so many practices so many days prior to a game or tournament. Or if you miss any school the day of a game you can't play. For my daughter we got an exception for dr's appointments and procedures so she could compete. However, if she misses school because of CD complaints then she may not compete...makes sense.
- Joined
- Nov 12, 2011
- Messages
- 2,412
Welcome! I will just reiterate what the others have said. Untreated and undertreated Crohn's is nothing to take lightly. My son went untreated for two years and then undertreated for another year. The result? He ended up having 10" of his small intestine removed at the ripe old age of 12.
The simmering, underlying inflammation can cause a lot of damage that you can't see on the outside. It sounds like your son may have some of this going on in his small intestine since the fecal cal numbers came back high? An endoscopy and colonoscopy are definitively in order, but note that neither can reach very far in to the small intestine. You may want to ask about a pill cam or MRE if his small intestine is of concern so you can get an idea of what may be going on there.
In retrospect, I completely regret not getting my son on a biologic sooner. He started Remicade in November and is doing sooooo well now. Puberty has finally started (he's almost 14) and he's finally growing. He feels great.
Last year he played on the JV tennis team without issue... well, until he flared mid-season. We nipped the flare in the bud right away and he was back at things a week later. Our kids are pretty amazing with how they manage their disease. Playing sports and leading normal lives is possible - if you keep the disease under control.
Please keep us posted on how his scopes go. Read up and educate yourself, but take breaks too! We're all here to help you through this so ask lots of questions.
The simmering, underlying inflammation can cause a lot of damage that you can't see on the outside. It sounds like your son may have some of this going on in his small intestine since the fecal cal numbers came back high? An endoscopy and colonoscopy are definitively in order, but note that neither can reach very far in to the small intestine. You may want to ask about a pill cam or MRE if his small intestine is of concern so you can get an idea of what may be going on there.
In retrospect, I completely regret not getting my son on a biologic sooner. He started Remicade in November and is doing sooooo well now. Puberty has finally started (he's almost 14) and he's finally growing. He feels great.
Last year he played on the JV tennis team without issue... well, until he flared mid-season. We nipped the flare in the bud right away and he was back at things a week later. Our kids are pretty amazing with how they manage their disease. Playing sports and leading normal lives is possible - if you keep the disease under control.
Please keep us posted on how his scopes go. Read up and educate yourself, but take breaks too! We're all here to help you through this so ask lots of questions.
crohnsinct
Well-known member
- Joined
- Mar 10, 2012
- Messages
- 6,469
DustyKat
Super Moderator
- Joined
- May 8, 2010
- Messages
- 25,247
Hi emmac and :welcome:
I’m so very sorry to hear about your lad. :ghug:
Delayed growth does indicate that disease has present for some time and unfortunately the development of an abscess is considered a complication of Crohn’s and so immediately takes him out of the mild stakes and puts him into the category of moderate to severe disease, perhaps with a leaning to severe, as does the weight loss if it is greater than >10% and in a boy your son’s age I would imagine that would be the case.
This disease has so many and varied presentations and you will find that a lack of overt symptoms is no guarantee of the severity of the disease. It can be cyclic in nature as it is with your son and it was with my daughter and depending on the location of the disease even the tell tale signs that most docs look for are absent, that being blood and diarrhoea. Neither of my two had those symptoms.
Jacqui is spot on with her comments about my son. My daughter went undiagnosed for a lengthy period of time and received her diagnosis on the operating table, she had not seen a GI as Crohn’s wasn’t on the radar due to the lack of ’normal’ symptoms. When she did she a GI post op he was able to tell by looking at her finger nails that inflammation had been present for about two years and on refection at the time I could confirm symptoms from about 18 months previously. With this in mind I fully believed that my daughter’s severity of disease and the need for her surgery was based on the fact that she was undiagnosed. She was 14 at this time.
Then 4 years later my son, then 17, developed very, very mild symptoms of a stomach bug that lasted a week, that was it. Looking back I did find other symptoms…fatigue and darkness under his eyes that we could easily attribute to a very heavy study and sport load but no pain, bleeding, diarrhoea, weight loss and so on. I asked that the GP do inflammatory markers, never in my wildest dreams expecting anything to come of it. As it was one of his inflammatory markers was raised and it snowballed from there, within two weeks we had a diagnosis of Crohn’s. The results from the scope rated his disease as mild to very mild and I honestly thought that with that we had a dodged a bullet and he would not face the outcome my daughter had. However within three weeks of that scope he developed complications, a fistula and abscess and he too ended up with surgery. It only takes one deep ulcer to create what happened to him regardless of the overall look of the mucosa.
We were initially presented with Prednisone and Imuran as a course of action with the latter addition of EN. If he did not have very clear clinical and objective markers of response after six weeks then he would move to Humira. Had that been the case, as much as I hated the thought of it, I would have welcomed it with open arms but then I am coming from a very different history and I well understand anyone feeling the way you do. As it was all those choices were taken out of our hands and surgery was our only option.
I do firmly believe that diet can and does play a role for many in gaining remission (EEN), helping maintain a remission (some do find particular diets assist with their health and well being) and alleviating symptoms when flaring (Low Residue diet). Not everyone has obvious foods they need to avoid and sometimes it may just come down to avoiding what doesn’t agree with you, much as it is for those of us without Crohn’s.
I think the main thing to remember with this disease is to never say never. Don’t become so enamoured with a treatment, whether it be traditional or alternative, that you refuse to believe what you see in front of you. Be flexible and open minded and be prepared to change tack when needed. This disease can be both complex and frustrating and you may well find that a blending of many philosophies is the best way to go as they compliment each other…modern medicine, diet, supplementation, exercise, counselling and so on.
Where is your son’s disease located?
Good luck and welcome aboard!
Dusty. xxx
I’m so very sorry to hear about your lad. :ghug:
Delayed growth does indicate that disease has present for some time and unfortunately the development of an abscess is considered a complication of Crohn’s and so immediately takes him out of the mild stakes and puts him into the category of moderate to severe disease, perhaps with a leaning to severe, as does the weight loss if it is greater than >10% and in a boy your son’s age I would imagine that would be the case.
This disease has so many and varied presentations and you will find that a lack of overt symptoms is no guarantee of the severity of the disease. It can be cyclic in nature as it is with your son and it was with my daughter and depending on the location of the disease even the tell tale signs that most docs look for are absent, that being blood and diarrhoea. Neither of my two had those symptoms.
Jacqui is spot on with her comments about my son. My daughter went undiagnosed for a lengthy period of time and received her diagnosis on the operating table, she had not seen a GI as Crohn’s wasn’t on the radar due to the lack of ’normal’ symptoms. When she did she a GI post op he was able to tell by looking at her finger nails that inflammation had been present for about two years and on refection at the time I could confirm symptoms from about 18 months previously. With this in mind I fully believed that my daughter’s severity of disease and the need for her surgery was based on the fact that she was undiagnosed. She was 14 at this time.
Then 4 years later my son, then 17, developed very, very mild symptoms of a stomach bug that lasted a week, that was it. Looking back I did find other symptoms…fatigue and darkness under his eyes that we could easily attribute to a very heavy study and sport load but no pain, bleeding, diarrhoea, weight loss and so on. I asked that the GP do inflammatory markers, never in my wildest dreams expecting anything to come of it. As it was one of his inflammatory markers was raised and it snowballed from there, within two weeks we had a diagnosis of Crohn’s. The results from the scope rated his disease as mild to very mild and I honestly thought that with that we had a dodged a bullet and he would not face the outcome my daughter had. However within three weeks of that scope he developed complications, a fistula and abscess and he too ended up with surgery. It only takes one deep ulcer to create what happened to him regardless of the overall look of the mucosa.
We were initially presented with Prednisone and Imuran as a course of action with the latter addition of EN. If he did not have very clear clinical and objective markers of response after six weeks then he would move to Humira. Had that been the case, as much as I hated the thought of it, I would have welcomed it with open arms but then I am coming from a very different history and I well understand anyone feeling the way you do. As it was all those choices were taken out of our hands and surgery was our only option.
I do firmly believe that diet can and does play a role for many in gaining remission (EEN), helping maintain a remission (some do find particular diets assist with their health and well being) and alleviating symptoms when flaring (Low Residue diet). Not everyone has obvious foods they need to avoid and sometimes it may just come down to avoiding what doesn’t agree with you, much as it is for those of us without Crohn’s.
I think the main thing to remember with this disease is to never say never. Don’t become so enamoured with a treatment, whether it be traditional or alternative, that you refuse to believe what you see in front of you. Be flexible and open minded and be prepared to change tack when needed. This disease can be both complex and frustrating and you may well find that a blending of many philosophies is the best way to go as they compliment each other…modern medicine, diet, supplementation, exercise, counselling and so on.
Where is your son’s disease located?
Good luck and welcome aboard!
Dusty. xxx
Thanks everyone. The gastro doc does have an MRE on order too. The upper and colonoscopy will be this Tuesday. The MRE will be 3 weeks later. His fecal number was in 600's. We live in NE Ohio, USA. I pray no surgery is needed. Like stated the kid acts like it is no big deal. His mother and I try to stay positive. We discuss our worries privately. We ask him how he feels or has questions. He does not say anything. I really think he does not know how to feel.
- Joined
- Jun 14, 2011
- Messages
- 6,551
Welcome to the forum! But, so sorry your son's illness brought you here. :ghug:
I can't really add much to the great advice and info you've already been given. As far as sports, my son played competitive hockey and also played on his school team. Aside from a few weeks of recovery after diagnosis (ie rebuilding lost weight, muscle, endurance), crohns has not affected his sports activities.
My son's been lucky in that he has not had a flare since his diagnosis - keeping this in mind, I found that the first year after diagnosis was the most time consuming - more frequent GI appointments, more testing, etc. He does have remicade infusions every six weeks but we have been able to usually schedule them on Saturday mornings, so it hasn't impacted his school schedule.
As was mentioned above, S did use enteral nutrition as his initial treatment to induce remission and was his only treatment for two years. He did very well with it and, even with remicade now, continues to supplement with nutritional shakes. I won't get into his whole story now but here are links to Kids on EN and Kids' success stories - Stephen's experience with EN is on these two threads as well as the experiences of many other kids here. I think you'll find both threads to be worth reading.
http://www.crohnsforum.com/showthread.php?t=27079
http://www.crohnsforum.com/showthread.php?t=36345
Good luck!! :ghug:
I can't really add much to the great advice and info you've already been given. As far as sports, my son played competitive hockey and also played on his school team. Aside from a few weeks of recovery after diagnosis (ie rebuilding lost weight, muscle, endurance), crohns has not affected his sports activities.
My son's been lucky in that he has not had a flare since his diagnosis - keeping this in mind, I found that the first year after diagnosis was the most time consuming - more frequent GI appointments, more testing, etc. He does have remicade infusions every six weeks but we have been able to usually schedule them on Saturday mornings, so it hasn't impacted his school schedule.
As was mentioned above, S did use enteral nutrition as his initial treatment to induce remission and was his only treatment for two years. He did very well with it and, even with remicade now, continues to supplement with nutritional shakes. I won't get into his whole story now but here are links to Kids on EN and Kids' success stories - Stephen's experience with EN is on these two threads as well as the experiences of many other kids here. I think you'll find both threads to be worth reading.
http://www.crohnsforum.com/showthread.php?t=27079
http://www.crohnsforum.com/showthread.php?t=36345
Good luck!! :ghug:
Welcome to the forum! You have already been given great advice, so I don't have to add anything. It is a very difficult road, especially in the beginning. And like you, I found the drugs to be as scary as the disease itself. But, once you see your child feeling better, you will feel better too. I hope you come up with a treatment plan that works and that you can be comfortable with. Take care!
Thank you all for your replies. Before this situation my wife and I knew we were so blessed to have 3 health children. We have an autistic nephew and a diabetic niece. We felt their struggles have kept us grounded. So we thought until now. Even through this we keep faith in God that he will continue to bless us. My wife and I are scared. Through all my research these past days, it is upsetting at how our youth are becoming ill. As a child I never remember any friends or family having issues. All health issues were elderly friends and family which this was accepted and expected. I wonder what in the world is causing all these illness and I can't help but to think it is vaccines, food processes, or chemicals. Amazing considering how much the government preaches health mandates and epa regulations. And how much better and involved they are for our interests than in the 1950's. Sorry to vent. Keeping the faith and praying for a cure.
- Joined
- Mar 17, 2013
- Messages
- 1,362
Emmac, I know this is scary. My husband has only cried 3 times in our marriage of 15 years, and my daughter's diagnosis was one of them. There are still times this disease makes me want to cry, and some of the most in depth heart felt conversations with my daughter have come around her & crohns.
This disease changes a lot of what normal ever was. I am still trying to develop a 'normal' we can manage. I waited too long to look for support, not just for my kid, but for myself as a parent of a child with a lifelong illness. This forum (the people in it especially!) is amazing, and I have met some great people here. After 2 years I am finally connecting with support groups in my area. Find them. Connect with CCFA or CCFC, where ever you are. Some of the parents here have visited each other when traveling to a city. Know in this you are not alone.
I have had tremendous support from my synagogue, and have now connected with a member that has Crohn's. Ask your minister, rabbi, priest, etc. They may have someone at your church that has gone through this that could show some support too. It took me a while to share that my kid even had something in my extended circle of friends and I am starting a network to lean on on top of this great forum. Make sure you look after yourself in this too the best you can, and keep faith things will get better.
And, FYI - No need to be sorry on venting. Venting is TOTALLY allowed, I for one have done it on many occasions!
This disease changes a lot of what normal ever was. I am still trying to develop a 'normal' we can manage. I waited too long to look for support, not just for my kid, but for myself as a parent of a child with a lifelong illness. This forum (the people in it especially!) is amazing, and I have met some great people here. After 2 years I am finally connecting with support groups in my area. Find them. Connect with CCFA or CCFC, where ever you are. Some of the parents here have visited each other when traveling to a city. Know in this you are not alone.
I have had tremendous support from my synagogue, and have now connected with a member that has Crohn's. Ask your minister, rabbi, priest, etc. They may have someone at your church that has gone through this that could show some support too. It took me a while to share that my kid even had something in my extended circle of friends and I am starting a network to lean on on top of this great forum. Make sure you look after yourself in this too the best you can, and keep faith things will get better.
And, FYI - No need to be sorry on venting. Venting is TOTALLY allowed, I for one have done it on many occasions!
I'm so sorry you had to find this forum but and I hope you find it a great source of support as I have particularly in the difficult days just after diagnosis like I did. You have gotten some great advice from parents who have children similar age to your boy. My little girl Lucy has been on humira for about 9 months and it had been a miracle drug for her and she has grown which is great. Best wishes to you and your family and I hope you find something that world for your boy.
Emmac, even when you are close to others who have kids with illnesses, it doesn't prepare you for when your own child gets sick. But you will be a help to others one day after going through what you are. It sounds like you have a strong faith and that is good. It is what has pulled us through.
I don't know why there are so many childhood diseases these days. I think we live in a sick earth. We have the honour here in NS of having the highest Crohn's in the world. I don't know why, but I'm thrilled with the honour.
I don't know why there are so many childhood diseases these days. I think we live in a sick earth. We have the honour here in NS of having the highest Crohn's in the world. I don't know why, but I'm thrilled with the honour.
- Joined
- Aug 28, 2011
- Messages
- 3,380
Just wanted to say hi and welcome. My son was diagnosed at age 12 - he is now 14 and doing well at the moment. I also resisted meds for a few months as my son was mild and tummy issues had gone after 8 weeks EN. However he ended up with peri-anal abscess and fistula, which I wonder if we could have avoided on meds. Now he is on 6mp and seems to be staying quite well. Hope things go well!
- Joined
- Jul 2, 2013
- Messages
- 6,750
Sorry you had to find us, but welcome! You've received really good advice so I don't think I can add to it. My daughter is 17 and on Humira and is just beginning to feel better. Good luck with whatever you choose, hope your boy starts to feel better soon!
Cleveland Clinic is one of the top centers in the US. I would write down your questions and take them to appointments and pretty much follow their advice. I won't repeat what so many have said since I agree with most of the advice you've received.
I always pass along the "BRAND" memory aid for visits:
B - what are the BENEFITS of the proposed treatment plan?
R - what are the RISKS?
A - what are the ALTERNATIVES?
N - what if we do NOTHING?
D - Decision
All the best
I always pass along the "BRAND" memory aid for visits:
B - what are the BENEFITS of the proposed treatment plan?
R - what are the RISKS?
A - what are the ALTERNATIVES?
N - what if we do NOTHING?
D - Decision
All the best
- Joined
- Apr 28, 2012
- Messages
- 6,310
Hi and welcome.
This is a wonderful forum and you've already been given some of the best advice you'll receive.....and we don't even have to pay for it. lol
My Grace is very much God's gift (a long with my son) and has amazed us with her attitude and outlook.
These kids put most adults to shame on what they deal with and still smile away the pain. I
don't think I could do it half as well.
Hugs to you and your family.
Hang in there it will get better.
This is a wonderful forum and you've already been given some of the best advice you'll receive.....and we don't even have to pay for it. lol
My Grace is very much God's gift (a long with my son) and has amazed us with her attitude and outlook.
These kids put most adults to shame on what they deal with and still smile away the pain. I
don't think I could do it half as well.
Hugs to you and your family.
Hang in there it will get better.
- Joined
- Feb 9, 2012
- Messages
- 968
Also check out Starbright World, a site like this one but for teens with chronic illness. Lots of kids with Crohn's on there and V says it great.
- Joined
- Dec 13, 2013
- Messages
- 78
Hope my advice isn't out of place here, but I've been suffering since childhood, but not properly diagnosed until last year.
Without running the gauntlet, I saw loads of quacks after complaining for the better part of 20 years, and was written off as IBS, Rapid Gastric Dumping Hypochondria, etc. Wound up at Cleveland Clinic last year, and found a caring staff.
First time ever, I didn't have doctors "Diagnosing Me on the Spot", but trying to find the reason I was so sick.
To put my value on Cleveland Clinic, I live 4 hours from Cleveland, and drive there almost every 2 weeks now. My health requires constant monitoring. (Poor Car).
My point here is Cleveland Clinic is world renowned. If not too private, what doctor is your daughter seeing?
Feel free to message me with any questions. I've been to EVERY SINGLE CAMPUS. I'm well versed with Cleveland Clinic and will do my best to answer any "concerns".
Humor Note: Frequent Flier Card when you end up back in the hospital / ER and the staff ask you by name, Now What?
