My name is Jenny and my daughter was just diagnosed with Crohns. She is 13. I am relieved that we finally have a diagnosis of what's going on with her. She has been having reactive arthritis is her knee which caused major swelling and pain every 6 months for the last year. This last visit they decided to send her to a GI dr. since she has also been having some small issues with her stomach. Having this diagnosis explains alot. She is very small for her age, she hadn't really started developing yet, and she's had fevers off and on for the last couple years with no explanation. I found this group to hopefully get an idea of what I need to know on this diagnosis and what others have found that works for them and their treatment.
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My daughter
- Thread starter JenEdwards
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Crohn's 35
Inactive Account
:welcome: Jenny.. I am so sorry your young daughter is plagued with this aweful disease and at her age, very embarrassing as well. Depending on her severity, it is always best to stick to mild or moderate or mod to severe active Crohns. For nutrition on the days she feels pain Ensure will help replace the nutrients lost as she is developing it is important. Diets are hit and miss, but mostly dairy affects us the most. Ginger helps the nausea, bloat and some cramping. I too had fevers and was not enemic from time to time and I think it is her system fighting the disease. Is she on an medication? Stress doesnt cause the disease but it can aggrivate the gut.
Many parents here to help you cope, I am sure you are going out of your mind with grief with all this. Hang in there, help is coming. Glad you are aboard!
Many parents here to help you cope, I am sure you are going out of your mind with grief with all this. Hang in there, help is coming. Glad you are aboard!
She's not on meds yet....we meet with the Dr. next week to get more questions answered and get her started. He wanted to wait for the biopsy results to come back to decide on what to start her on.
Crohn's 35
Inactive Account
Best thing to do is write stuff down of all her daily goings on, because you forget. I just give my list to the Gi so he can absorb it better. Let us know how the appt turns out ok? :hang:
Thanks for the suggestion and warm welcome Pen. After work today I am going to go get a little notebook so I can keep track of this all for and also write down any questions we all have.
Hi Jen,
Welcome to the group! I am sorry that we have to 'meet' under these circumstances, but this group is fantastic and so knowledgeable and helpful - you will be so happy you found them! My son is 14 and has so many of the same issues as your daughter, and for a year his ped kept saying he kept catching a stomach bug! But he has stunted growth, delayed puberty, aching joints, low grade fevers, etc. He was diagnosed in September after being hospitalized with a blockage and his disease progressed very quickly needing surgery last month, but he is doing great now. And, everyone here has been indispensable!
Let us know how her biopsy goes!
Welcome to the group! I am sorry that we have to 'meet' under these circumstances, but this group is fantastic and so knowledgeable and helpful - you will be so happy you found them! My son is 14 and has so many of the same issues as your daughter, and for a year his ped kept saying he kept catching a stomach bug! But he has stunted growth, delayed puberty, aching joints, low grade fevers, etc. He was diagnosed in September after being hospitalized with a blockage and his disease progressed very quickly needing surgery last month, but he is doing great now. And, everyone here has been indispensable!
Let us know how her biopsy goes!
DustyKat
Super Moderator
Hi Jen and :welcome:
Sorry you had to find yourself here but on the upside it is a fab place for support and info. My daughter was diagnosed when she was 14 and I hear you loud and clear on the relief at finally getting a diagnosis, it certainly has the puzzle pieces falling into place doesn't it!
Roo didn't through puberty until she started to receive treatment and then bang! Over the next 18 months the change was amazing.
A diary is a great idea and we have a guideline in the wiki..........
http://www.crohnsforum.com/wiki/Diary-Inclusions
In Roo's case she was undiagnosed until she had emergency surgery that resulted in a bowel resection, she has been in remission since then. She had a large amount of bowel removed and was left with short bowel syndrome but over the years she has come to settle on a vegan diet and this works well for her and the issues she has.
My son has just been recently diagnosed and we are still in the process of sorting things out. He was diagnosed very quickly but nothing seems to be going according to plan so we are still very much in the thick of it. I thought we would be able to avoid going down the path that Roo did but it isn't panning out that way.
Both my kids have CD in the ileum and depending what type of CD your daughter has treatments may vary. It's lovely to have you here advocating for your daughter and please keep us posted on how things are going. Any questions just fire away and remember, there's no such thing as a dumb question or TMI!!!
Good luck and welcome aboard!
Take care Mom, :hug:
Dusty
Sorry you had to find yourself here but on the upside it is a fab place for support and info. My daughter was diagnosed when she was 14 and I hear you loud and clear on the relief at finally getting a diagnosis, it certainly has the puzzle pieces falling into place doesn't it!
Roo didn't through puberty until she started to receive treatment and then bang! Over the next 18 months the change was amazing.
A diary is a great idea and we have a guideline in the wiki..........
http://www.crohnsforum.com/wiki/Diary-Inclusions
In Roo's case she was undiagnosed until she had emergency surgery that resulted in a bowel resection, she has been in remission since then. She had a large amount of bowel removed and was left with short bowel syndrome but over the years she has come to settle on a vegan diet and this works well for her and the issues she has.
My son has just been recently diagnosed and we are still in the process of sorting things out. He was diagnosed very quickly but nothing seems to be going according to plan so we are still very much in the thick of it. I thought we would be able to avoid going down the path that Roo did but it isn't panning out that way.
Both my kids have CD in the ileum and depending what type of CD your daughter has treatments may vary. It's lovely to have you here advocating for your daughter and please keep us posted on how things are going. Any questions just fire away and remember, there's no such thing as a dumb question or TMI!!!
Good luck and welcome aboard!
Take care Mom, :hug:
Dusty
One question I do have for everyone here. How often does it happen that more than one child in the family will have it? I have an 11 and 6 yr old also.
Crohn's 35
Inactive Account
No set rules, but as I was told, if one parent has IBD it is 5%, if both parents have it goes up to 50%. But, I don't get it cause my parents had nothing and my grandmother had gastroenitis and all 5 of my sibs have a form it. Apparently my grandmother has a an uncle who is a doctor in Austrailia has too. So who knows. Try not to worry about the others. Is there any decendants that have IBD in your family?
DustyKat
Super Moderator
I certainly wasn't expecting Matt to be diagnosed but they do say there is a 30% chance of someone developing IBD if a sibling is affected.
There are certainly members here that have strong family histories of IBD and yet there are many members that are the only ones in their family affected. I recently started a thread about siblings.................
http://www.crohnsforum.com/showthread.php?t=15908
I know it's hard not to worry about these things, do you have a family history of it?
Dusty.
There are certainly members here that have strong family histories of IBD and yet there are many members that are the only ones in their family affected. I recently started a thread about siblings.................
http://www.crohnsforum.com/showthread.php?t=15908
I know it's hard not to worry about these things, do you have a family history of it?
Dusty.
I don't have any family history of it. Her father doesn't either. The only thing on her father side is they have a history of colon/breast cancer. Both of us have touchy stomachs but nothing like this.
Also looking back at the notes from yesterday. Her inflammation was in the ileum. It's the spot that he did the biopsy on. We originally had an appt on March 8 but I moved it up to next week on the 3rd. The more I read about it the more nervous/scared I am getting about it all.
DustyKat
Super Moderator
Hey Jen,
I know this will be hard believe right now but it will get easier. As your daughter receives treatment and the symptoms fade you settle into a new normal. Things are never quite the same but your days do become less worrisome as time goes on.
I have read and read and read over the last 4 years about CD and when my son was diagnosed the emotions came back with vengeance and probably worse this time, the anger, frustration, fear, constant worry. I am still having trouble dealing with it and no doubt will for some time but I do know that things will eventually get better.
The ileum is the most common area to develop Crohns and it does affect people differently. It seems my children are hit severely straight up but I would venture to say that many or perhaps most are not.
AND there is light at the end of the tunnel!! Roo has been in remission for nearly 5 years now. She is living away at university and living life to the full. Heck she emailed me yesterday to say she was standing as a local candidate at the state election next month!
I know and understand the dark days you are in right now but many, many things are possible for your daughter in the future. I would never have believed where Roo is now, 5 years ago we came within 24 hours of losing her. I have no doubt the level of passion and drive she has is because of the experiences she has had with Crohns.....................life is now good, very good.
Take care, :hug:
Dusty
I know this will be hard believe right now but it will get easier. As your daughter receives treatment and the symptoms fade you settle into a new normal. Things are never quite the same but your days do become less worrisome as time goes on.
I have read and read and read over the last 4 years about CD and when my son was diagnosed the emotions came back with vengeance and probably worse this time, the anger, frustration, fear, constant worry. I am still having trouble dealing with it and no doubt will for some time but I do know that things will eventually get better.
The ileum is the most common area to develop Crohns and it does affect people differently. It seems my children are hit severely straight up but I would venture to say that many or perhaps most are not.
AND there is light at the end of the tunnel!! Roo has been in remission for nearly 5 years now. She is living away at university and living life to the full. Heck she emailed me yesterday to say she was standing as a local candidate at the state election next month!
I know and understand the dark days you are in right now but many, many things are possible for your daughter in the future. I would never have believed where Roo is now, 5 years ago we came within 24 hours of losing her. I have no doubt the level of passion and drive she has is because of the experiences she has had with Crohns.....................life is now good, very good.
Take care, :hug:
Dusty
Hello from me too as I am also new here. I have 4 boys. My oldest was DX with CD Nov. of 2006, next son down was DX with IBS & in May 2009, & the youngest age 11 DX with CD the end of September 2010. I was not really aware of the statistics but knew there could be a link & know of some families that do have more than one in their family with an IBD. My DH & I have no family history of it either. Just some on both sides that were sensitive to some foods, tended to get upset stomach & run some times. No one ever DX with anything.
Easier said than done....take a deep breath & take one day at a time! We are all here for each other!
Easier said than done....take a deep breath & take one day at a time! We are all here for each other!
Dusty......Wonderfully Well Said! AMEN & the sentiment of me & probably many other parents out there!!!!
Hi Jen, glad you made your way here!! I wish none of us needed to be here but together, we can make it! I also have two other children and every time they complain, I look at them with extra caution.
There's another mother (AZMOM, Julie) whose daughter has arthritis as well. Between Dusty and her, there is a great deal of crohn's knowledge. The best to you and your daughter!!
There's another mother (AZMOM, Julie) whose daughter has arthritis as well. Between Dusty and her, there is a great deal of crohn's knowledge. The best to you and your daughter!!
AZMOM
Moderator
Hi Jenny! Yeah, Dex was talking about me.
My daughter started with arthritis at 3, no Crohn's diagnosis until age 6. She's almost 8 now and growing like gangbusters. I remember the diagnosis days like yesterday though. You are probably so relieved to have an answer and now trying to figure out what the heck this means for her and for your family.
I will totally second what Dusty said about the first few months being crazy. But hopefully you will find a good mix of diet and meds to get her on the road to her new normal. Once Claire's symptoms calmed down, she returned to a completely normal (and even sometimes healthy :yfaint diet.
Oh and yes, I have heard Dusty's figure of 30% chance for siblings as well. Claire has an older brother who, to date, has no issues.
Ask your daughter's doctor lots of questions. Read read read. And post here anytime!! We're here to help.
Big hug -
My daughter started with arthritis at 3, no Crohn's diagnosis until age 6. She's almost 8 now and growing like gangbusters. I remember the diagnosis days like yesterday though. You are probably so relieved to have an answer and now trying to figure out what the heck this means for her and for your family.
I will totally second what Dusty said about the first few months being crazy. But hopefully you will find a good mix of diet and meds to get her on the road to her new normal.
Once Claire's symptoms calmed down, she returned to a completely normal (and even sometimes healthy :yfaint diet. Oh and yes, I have heard Dusty's figure of 30% chance for siblings as well. Claire has an older brother who, to date, has no issues.
Ask your daughter's doctor lots of questions. Read read read. And post here anytime!! We're here to help.
Big hug -
With my daughter she ended up at the Children's Hospital in our area Jan 10, July 10 and again Jan 11. Her knee would swell and be very painful. They at first thought it was some kind of infection that settled in her knee and treated her for it with strong antibiotics. Nothing ever came back as positive on what bacteria or virus it was. This last visit to the hospital the dr.'s (we saw the infectious disease, ortho and a rheumatologist) decided that it must be something else and said they referred her to the gi dr.
I'm so glad I found this group to get more info from. Thanks for the warm welcome from everyone too.
I'm so glad I found this group to get more info from. Thanks for the warm welcome from everyone too.
Oh one more thing.....what books would you all recommend?
Hi Jenny and welcome. My son was recently diagnosed Dec/10 and this site has been a great source of comfort and support for me. I find myself updating my family on how everyone is doing on a regular basis now.lol It is very scary at first, but as you learn more and get a game plan from the docs, it will becom easier. Good luck and keep us posted.
Rachel
Rachel
Hi Connie!
The appt went well. He upped her meds a little and wants her to go for blood work in 2 weeks to see if they are helping. If not he is going to add in 6mp. I really like this office/doctor and they seem to be very good. I would love to have the info for it. I am wanting as much info as I can find so we know what we are dealing with now and in the long run.
The appt went well. He upped her meds a little and wants her to go for blood work in 2 weeks to see if they are helping. If not he is going to add in 6mp. I really like this office/doctor and they seem to be very good. I would love to have the info for it. I am wanting as much info as I can find so we know what we are dealing with now and in the long run.
Hi Julie,
I will let you know after the bloodwork what he says. Any info you want to send me about it would be great since I know nothing about it. It will help me make a more informed decision if it comes up.
I wish you could come down here for it too. Hubby and I are both going to go to it and depending on if it's open to younger ages take my daughter so she can be more informed. I'm wondering though if she just might find it extremely boring lol.
I will let you know after the bloodwork what he says. Any info you want to send me about it would be great since I know nothing about it. It will help me make a more informed decision if it comes up.
I wish you could come down here for it too. Hubby and I are both going to go to it and depending on if it's open to younger ages take my daughter so she can be more informed. I'm wondering though if she just might find it extremely boring lol.
AZMOM
Moderator
Hey Jen, I found the event info. Click on the link (or copy paste if I do this wrong! ) and then scroll down towards the bottom. It tells you how to register.
Hugs :hug:
J.
http://www.ccfa.org/chapters/georgia/
) and then scroll down towards the bottom. It tells you how to register.Hugs :hug:
J.
http://www.ccfa.org/chapters/georgia/
Thanks Julie! I just signed up to go.
Jenny
Jenny