My 9 yr. old son was just diagnosed with Crohn's after several months of being very sick. His symptoms became very noticeable in July 2013 with frequently going to the bathroom & very lose stools, after school started back in September, going to the bathroom become more & more frequent with diarrhea. I honestly just thought it was a nervous stomach, then begin to notice my son was very tired all of the time and complaining of joint pain. I was still thinking there was a simple answer, he has always been healthy. The diarrhea became chronic, the fatigue increased, but he never complained. The Tuesday before Thanksgiving, he begin to run a fever, I took him to his regular doctor & she said he had a sinus infection. We discussed the diarrhea & he was taken off milk & tested for an allergy, neither of these were the problem. From this point on, my soon begin to go down hill. The diarrhea,fatigue and fevers increased, he wanted to eat, but could not eat. However, he was a trooper & we made it through the holidays. He had an appt. to see his doctor, this is when things begin to change. My son had lost 6 lbs. in about 4 weeks, he was very pale. His doctor decided he needed to see a GI dr.. This was on a Saturday, my son begin to run a high fever that evening & all day Sunday. I had him back to his dr. Monday morning. At this point, my son was very sick, so we were referred to the ER at Children's Hospital. We were seen by a GI doctor & tons of test were done. They schedule an upper GI & colonoscopy, which revealed he has Crohn's disease. He is currently being treated with steroids to eliminate the inflammation at this time, then we will develop a plan of treatment. My son is very confused & angry at this point. I am being very honest, but I don't know I completely understand this disease & how it will effect our lives. I just pray he responds well to treatment & I get my 9 yr old boy back.
Son just diagnosed w/Crohn's
- Thread starter ConJLee
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Hey ConJLee - I am so sorry to hear about your son's illness and subsequent diagnoses... My son went through a very similar experience (but he was 13 at the time) and I too thought it was something simple (tummy virus) until the paleness, pain, etc., kicked in...
You will learn more about your son's GI tract, nutritional needs, emotional and other physical needs in the next few weeks than you could ever imagine.... Hold tight and start writing - keep a journal of *everything* and get copies of EVERYTHING (every lab, every picture, every-every thing...).
This is an amazing site for parents with lots of support, you have found a great group.
I pray they are able to get your son feeling better and onto the right medications for him. There is ALOT of information out there - weigh everything for what is best for your son - don't be afraid to ask for a 2nd opinion. Read the sticky notes at the top of the Parent Forum - great info and don't be afraid to ask a question - there are NO dumb questions - just DUMB diseases!
Sending prayers your way... God bless.
You will learn more about your son's GI tract, nutritional needs, emotional and other physical needs in the next few weeks than you could ever imagine.... Hold tight and start writing - keep a journal of *everything* and get copies of EVERYTHING (every lab, every picture, every-every thing...).
This is an amazing site for parents with lots of support, you have found a great group.
I pray they are able to get your son feeling better and onto the right medications for him. There is ALOT of information out there - weigh everything for what is best for your son - don't be afraid to ask for a 2nd opinion. Read the sticky notes at the top of the Parent Forum - great info and don't be afraid to ask a question - there are NO dumb questions - just DUMB diseases!
Sending prayers your way... God bless.
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Welcome ConJLee,
Sorry you have had to join our club. My son was 10 when he was diagnosed, he is now 14. As Champsmom says copies of everything. I have a binder I keep copies of everything in. Why do this: It will help you to track trends, know what is normal for him, help you remember, I also figure someday when he has to transition to an adult GI it will be helpful for that GI to have his whole history, what we've tried, what's worked and what hasn't.
Food journal in the beginning was helpful as well, while food wont start a flare it is certainly helpful to know which foods make it worse for him, some my always bother him whether he is in a flare or remission. My son when in remission can eat pretty much anything although we always stay away from popcorn and seeds no matter what.
There are lots of options for medications as well take a look at the treatment club thread here http://www.crohnsforum.com/showthread.php?t=44908 It will give you an idea of different treatments.
Another thing to keep in mind about this forum is that a lot of people post when they are having a really rough time when they or their child are feeling healthy they are out enjoying life. So take a look at success stories as well http://www.crohnsforum.com/showthread.php?t=27079
Keep us posted on your son's journey we have so many wonderful parents and they have all become like family and it is amazing to virtually see these children grow and reach milestones.
Sorry you have had to join our club. My son was 10 when he was diagnosed, he is now 14. As Champsmom says copies of everything. I have a binder I keep copies of everything in. Why do this: It will help you to track trends, know what is normal for him, help you remember, I also figure someday when he has to transition to an adult GI it will be helpful for that GI to have his whole history, what we've tried, what's worked and what hasn't.
Food journal in the beginning was helpful as well, while food wont start a flare it is certainly helpful to know which foods make it worse for him, some my always bother him whether he is in a flare or remission. My son when in remission can eat pretty much anything although we always stay away from popcorn and seeds no matter what.
There are lots of options for medications as well take a look at the treatment club thread here http://www.crohnsforum.com/showthread.php?t=44908 It will give you an idea of different treatments.
Another thing to keep in mind about this forum is that a lot of people post when they are having a really rough time when they or their child are feeling healthy they are out enjoying life. So take a look at success stories as well http://www.crohnsforum.com/showthread.php?t=27079
Keep us posted on your son's journey we have so many wonderful parents and they have all become like family and it is amazing to virtually see these children grow and reach milestones.
I'm so sorry that your son has been diagnosed with Crohn's. I can appreciate how overwhelming it must feel. I hope you can find relief that you have passed one huge hurdle: you have a diagnosis. The problem is identified and hopefully now steps to help him return to feeling better can begin.
I'm new to this forum, with an undiagnosed child, and have been utterly amazed at how incredibly compassionate and helpful the people on this forum are. I'm confident that you will find oodles of helpful information and many parents who will help you along this journey.
Hugs to you and your son.
I'm new to this forum, with an undiagnosed child, and have been utterly amazed at how incredibly compassionate and helpful the people on this forum are. I'm confident that you will find oodles of helpful information and many parents who will help you along this journey.
Hugs to you and your son.
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My son was dx at 7 . He is now 10.
It can get better it just takes a while think months in the. Shinning to find the right med combo that works for your kid. Everyone is different so don't be scared by the meds side effects since those are just possible side effects which may not even happen.
Getting you child happy and healthy again is the key -
Doing that means a lot of trial and error.
EEN ( kids boost or pediasure , peptamen jr or peptide given with out food )
Can be used to reduce inflammation instead of or in addition to steriods.
Most kids need at leas an immunosuppressant (6-mp or Imuran).
These can take months to become effective . Most docs start them the same time as the steriods .
Weight gain and growth can be normalized by using EEN or en ( formula plus food ) in addition to meds .
After two and half years my kiddo swims competitvely , skis has gained 30 or more pounds and grown close to 7 inches due to the right meds ( humira +peptamen jr )
http://www.nestlenutritionstore.com...n/specialized-nutrition?catpath=pediatric.2.2
Normal or new normal can happen so be patient .
It can get better it just takes a while think months in the. Shinning to find the right med combo that works for your kid. Everyone is different so don't be scared by the meds side effects since those are just possible side effects which may not even happen.
Getting you child happy and healthy again is the key -
Doing that means a lot of trial and error.
EEN ( kids boost or pediasure , peptamen jr or peptide given with out food )
Can be used to reduce inflammation instead of or in addition to steriods.
Most kids need at leas an immunosuppressant (6-mp or Imuran).
These can take months to become effective . Most docs start them the same time as the steriods .
Weight gain and growth can be normalized by using EEN or en ( formula plus food ) in addition to meds .
After two and half years my kiddo swims competitvely , skis has gained 30 or more pounds and grown close to 7 inches due to the right meds ( humira +peptamen jr )
http://www.nestlenutritionstore.com...n/specialized-nutrition?catpath=pediatric.2.2
Normal or new normal can happen so be patient .
- Joined
- Jan 17, 2013
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- 228
Sorry that you have had to find this site, it's never easy when your child has just been diagnosed with crohns. I will say this site is brilliant for help and advice. It has been a lifeline for me.
My son was diagnosed when he was 8 [ now 13 ]. He had many symptoms for around 18 months before the diagnoses, though diarrhea wasn't one of them. Crohns or any IBD wasn't something I thought of at all so it was a huge shock to learn this is what he had.
The first few days / weeks are difficult finding your way round new things, medication, GI doctors and appointments. But it does become easier once you understand more about the disease. You will probably find after a few days on steriods that you son will be far better. It took 3 days for them to kick in with my son and it was like having a different child to what he had been the previous months. They made an amazing difference. My son was put onto Pentasa at the same time as the steriods. Your GI doctor will talk you through the best meds for your son.
Like others have said, keep records of everything. I keep a file of all appointments, doctors we see and his medication .
My son was diagnosed when he was 8 [ now 13 ]. He had many symptoms for around 18 months before the diagnoses, though diarrhea wasn't one of them. Crohns or any IBD wasn't something I thought of at all so it was a huge shock to learn this is what he had.
The first few days / weeks are difficult finding your way round new things, medication, GI doctors and appointments. But it does become easier once you understand more about the disease. You will probably find after a few days on steriods that you son will be far better. It took 3 days for them to kick in with my son and it was like having a different child to what he had been the previous months. They made an amazing difference. My son was put onto Pentasa at the same time as the steriods. Your GI doctor will talk you through the best meds for your son.
Like others have said, keep records of everything. I keep a file of all appointments, doctors we see and his medication .
Welcome to the forum! My son started getting sick 1 yr ago, and was dx'd last March at age 8. He was on prednisone for a total of 5 months, including the taper, and is currently on methotrexate for maintenance. We started seeing improvements right away on prednisone, but it took the full 5 months for him to reach remission (I feel like I should touch wood when I say "remission").
I hope you have your son feeling like his old self soon. You will learn lots about Crohn's in the coming weeks, and reading all you can about it is great. But, take a break from the reading if it becomes overwhelming. I know I have to at times, or it feels like Crohn's is controlling our lives! Take care, and let us know how your son gets along.
I hope you have your son feeling like his old self soon. You will learn lots about Crohn's in the coming weeks, and reading all you can about it is great. But, take a break from the reading if it becomes overwhelming. I know I have to at times, or it feels like Crohn's is controlling our lives! Take care, and let us know how your son gets along.
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- Apr 15, 2012
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Look at Pete has crohn's
And the other ccfa link on e comic books which are good for that age level.
Here
http://www.ccfa.org/assets/pdfs/ccfa-online-comicbook.pdf
http://www.ccfa.org/assets/pdfs/activitybookweb.pdf
Enjoy
It covers enough in a manner they can understand and deal with
And the other ccfa link on e comic books which are good for that age level.
Here
http://www.ccfa.org/assets/pdfs/ccfa-online-comicbook.pdf
http://www.ccfa.org/assets/pdfs/activitybookweb.pdf
Enjoy
It covers enough in a manner they can understand and deal with
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Welcome to the forum. Sorry you had to find us but glad you did. My daughter was diagnosed at age 10. This is a great place to find lots of information. I encourage you to look at the treatment forums and read about the different treatments available then come back and ask any questions you may have. Let us know how we can can help. Sending lots of healing hugs to you and your son!
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I would be as honest as you can about what your son is going through. It is surprising how much our children understand. Also they more they understand, the less frightened they will be. Never lie or keep information from your son. If he asks are they going to take blood, or do investigations, tell him what you know. If you don't know what is going to happen, tell him you don't know. Just reasure that you will be with him all the time. Obviously you don't need to go into minute detail, but talk to him about your understanding of what is happening.
Every step of the way my son is kept up to date on everything, the condition, his meds, appointments etc. My son is probably more knowledgeable than I am on his condition :ylol: My son is 13 and we have been through major problems of him having blood tests, now resolved thankfully. But one of the ways he controls what he wants done is for me to be with him. A number of nurses who take blood tell him he is too old to have his mum with him, BUT it is his choice, and if that is what he feels comfortable with, that is what we do.
It is about allow your son choices, within limits. Listen to what your son says. Take a look at Pete's got crohns as my little penguin has recommened.
It will get easier, you are still in early days of a new joureny :ghug:
I am honest with my son about his CD, but he is just 9, dx'd at age 8, so I keep things age appropriate. I try to remain positive about his condition and try not to express my worries when he's around. And I don't give him more info than he needs. It's a bit of a balancing act.
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Welcome! I joined the group in December when my DD was diagnosed just after her 10th birthday. It has been so overwhelming, but this group has been most helpful! I also joined a private FB page for parents of children suffering from IBD. It has been helpful as well. Best wishes to you and your son.
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Have always been honest but age appropriate. At 10 he was told blood tests were to check if his medicine was working at age 14 1/2 he knows that ESR and CRP are inflammation markers and what range he should be in, what each medicine does how it helps control the disease. Although the GI and myself have final say right now in his treatment, we take into consideration his thoughts and opinions on it.
Just recently when deciding between Humira and Remicade he told his GI he would rather have remicade, would prefer not to do the shots unless he has to.
Just recently when deciding between Humira and Remicade he told his GI he would rather have remicade, would prefer not to do the shots unless he has to.
