I have three little girls, my two older have Crohn's - first my middle was diagnosed at 8 months, and two months later my oldest was diagnosed at 3. They are now 3 and 5, and this is the only life they've known. I could go into everything they've been through, but everyone here knows. It's horrible. Both understand that they have a disease, and that not all kids have it. But my 5 year old has just discovered that life would be a lot better if she DIDN'T have it. She has begun getting depressed when her stomach hurts, and keeps talking about how much she hates Crohn's. Her friends can "eat whatever they want, and don't get 'pokes' (what we call shots) every week." My 3 year old is a little copy-cat, and has started to do the same. I asked them both if they'd like to meet other kids with Crohn's and their faces lit up. They REALLY want to interact with other IBD kiddos, but I don't even know how to go about finding kids this young with this diagnosis. We're in the Seattle area. Any ideas? Thanks so much.
Mom of 2 under 5 w/ Crohn's
- Thread starter jworton
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Welcome JW! My heart goes out to you and your little ones. Are there other family members with IBD's? Izzismom, Angie's daughter is 5, I think. There have been a few with children that young come and go. I hope you'll stick around! Sorry you had to come looking though! Good luck!!
What meds are they on or have been? What in the world did you have to do to treat an 8 month old baby??!!
What meds are they on or have been? What in the world did you have to do to treat an 8 month old baby??!!
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Nice to "meet" you, sad to read about more tiny children with lifelong illness.
I can't help much as Violet is a teen but I just wanted to say welcome. :rosette2:
Living in a big, progressive city there must be some local support groups for kids. Have you asked their GI if he knows of one?
When they get older, age 7 I think, they can go to camp for IBD kids sponsored by CCFA, they have different locations all over the country and it's way cheap, five days was like $250. Violet went in 09 and she LOVED it. All kids and most counselors had IBD. Check the CCFA website's kids' section too, they have local support groups listed.
I can't help much as Violet is a teen but I just wanted to say welcome. :rosette2:
Living in a big, progressive city there must be some local support groups for kids. Have you asked their GI if he knows of one?
When they get older, age 7 I think, they can go to camp for IBD kids sponsored by CCFA, they have different locations all over the country and it's way cheap, five days was like $250. Violet went in 09 and she LOVED it. All kids and most counselors had IBD. Check the CCFA website's kids' section too, they have local support groups listed.
Thanks all! Yes, I told my oldest (Harper) about the camps and she is very excited to go - "two more months", she says 
Didn't have the heart to correct her, but to a 5 year old two more months is probably the same as two more years!
My middle (Nora), who was diagnosed at 8 months was first put on prednisone for about 4 weeks. It immediately helped her pain, and by that time her sister was diagnosed, so they both went on sulfasalazine. Next they tried Pentasa, and a year ago they started weekly sub-q injections of methotrexate, which finally put them both into remission. A few months ago Nora made it onto the growth chart for the first time in her life (we had a party), but docs are thinking she will be little forever.
Didn't have the heart to correct her, but to a 5 year old two more months is probably the same as two more years!My middle (Nora), who was diagnosed at 8 months was first put on prednisone for about 4 weeks. It immediately helped her pain, and by that time her sister was diagnosed, so they both went on sulfasalazine. Next they tried Pentasa, and a year ago they started weekly sub-q injections of methotrexate, which finally put them both into remission. A few months ago Nora made it onto the growth chart for the first time in her life (we had a party), but docs are thinking she will be little forever.
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Have their docs ever suggested enteral nutrition? We have used it from day 1 and wouldn't give it up even if we had to pay for it ourselves. Efficacy has been confirmed by quite a few studies to be as effective as pred.
Nutritional issues are the main reason for growth delay in these kids due to the malabsorption most of them have.
In UK, Japan and Canada it is THE first line tx for peds pts.
Nutritional issues are the main reason for growth delay in these kids due to the malabsorption most of them have.
In UK, Japan and Canada it is THE first line tx for peds pts.
I agree on the Enteral Nutrition benefit
Hi there,
I am sorry tonhear about your daughters and Crohn's. Mine was diagnosed a little bit later. I was desperate to see her loose weight and suffer so much pain. We went through several meds untill I read about Enteral Nutrition. Basically it is drinking a formula as a way of nutrition. Some children have a nasogastric tube to ingest it at night, but mine does it orally. I will not say it is easy, no. But it is virtually free of side effects and will show results sooner than later. In my daughter's case it induced remission, and of course helped with the growth. She is a 50/50 percentile kid now, even a couple of inches taller than me.
It was hard tomfind a GI that would back me withnthis and not tell me it was "too difficult", but I did find one and it worked. Cata, my daughter, avoided Remicade thanks to EN.
Regarding meeting others your kids age with IBD, try this other forum of parentos of children with IBD http://www.dragonpack.com/ibdsupport/parents/
THere are also several groups on Facebook: http://www.facebook.com/groups/63580908645/
http://www.facebook.com/groups/338177529706/ this last one has several parents of children who have done Enteral Nutrition.
If you would like to know more about EN, this book is great an easy to read: Beat Crohn's! Getting to Remission with Enteral Nutrition, by Margaret Oppenheimer. They had it in my public library here in Miami, but you can get it on Amazon too.
I havebeen asked by our GI to coach other parents on how to do EN with there kids, and it has been succesful, so let me know if you need anything else! Hang on in there.... There are many more of us out here to listen and help!
Hi there,
I am sorry tonhear about your daughters and Crohn's. Mine was diagnosed a little bit later. I was desperate to see her loose weight and suffer so much pain. We went through several meds untill I read about Enteral Nutrition. Basically it is drinking a formula as a way of nutrition. Some children have a nasogastric tube to ingest it at night, but mine does it orally. I will not say it is easy, no. But it is virtually free of side effects and will show results sooner than later. In my daughter's case it induced remission, and of course helped with the growth. She is a 50/50 percentile kid now, even a couple of inches taller than me.
It was hard tomfind a GI that would back me withnthis and not tell me it was "too difficult", but I did find one and it worked. Cata, my daughter, avoided Remicade thanks to EN.
Regarding meeting others your kids age with IBD, try this other forum of parentos of children with IBD http://www.dragonpack.com/ibdsupport/parents/
THere are also several groups on Facebook: http://www.facebook.com/groups/63580908645/
http://www.facebook.com/groups/338177529706/ this last one has several parents of children who have done Enteral Nutrition.
If you would like to know more about EN, this book is great an easy to read: Beat Crohn's! Getting to Remission with Enteral Nutrition, by Margaret Oppenheimer. They had it in my public library here in Miami, but you can get it on Amazon too.
I havebeen asked by our GI to coach other parents on how to do EN with there kids, and it has been succesful, so let me know if you need anything else! Hang on in there.... There are many more of us out here to listen and help!
KWalker
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Welcome to the forum! I know what you mean. I was diagnosed when I was only 2 years old so like you said, this is all I know. I had some really bad times when I spent months in the hospital one time, my mom used to drive me 2 hours each way to the childrens hospital every month for Remicade, etc but the way I look at it I got it all out of the way. I'm currently medication free and managing my crohns with diet. Sure it could come back at anytime but I would take what I've been through anyday rather than getting diagnosed during middle adulthood and potentially throwing away everything.
This is all I know, this is what I'm used too, and I'm okay with that. I know what I have to do, and I make it work. I don't let it limit myself and I'm currently in univeristy to get my doctors degree so that shows you this disease doesn't mean your life is over.
The best advice I could give a mom of a young child with crohns is to be over cautious/protective and at the first sign of anything, get them checked out because if it weren't for my mom doing that, I have no idea how I'd be today.
And this might sound silly, but the way I met people my age with crohns, was when I doing remicade infusions in the childrens hospital my doctor always seemed to have other children getting the same thing at the same time. Its almost like he did it so we could meet people like ourselves. We would play videogames, puzzles, watch movies, or anything else we could do while getting Remicade.
If you have any questions or concerns, don't hesitate to make a post and we would love to help you. Enjoy your stay!
This is all I know, this is what I'm used too, and I'm okay with that. I know what I have to do, and I make it work. I don't let it limit myself and I'm currently in univeristy to get my doctors degree so that shows you this disease doesn't mean your life is over.
The best advice I could give a mom of a young child with crohns is to be over cautious/protective and at the first sign of anything, get them checked out because if it weren't for my mom doing that, I have no idea how I'd be today.
And this might sound silly, but the way I met people my age with crohns, was when I doing remicade infusions in the childrens hospital my doctor always seemed to have other children getting the same thing at the same time. Its almost like he did it so we could meet people like ourselves. We would play videogames, puzzles, watch movies, or anything else we could do while getting Remicade.
If you have any questions or concerns, don't hesitate to make a post and we would love to help you. Enjoy your stay!
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CatasMom, thanks!
I love other EN success stories. :rosette1:
I love other EN success stories. :rosette1:
Since Nora was only 8 months old when she was diagnosed, we technically did EN for a few months. They prescribed the formula and that was all she had - no other food. It did help her gain some weight, but she was still only about 13lbs on her first birthday. Right now they are both doing so well on the methotrexate I'd rather not mess with it, but it's definitely something I'd be more than willing to try.
Enteral nutrition did the trick for my son too. He had the ng tube and was on exclusive EN for 12 weeks this past fall. It put him into remission and he gained about 20 pounds! He's currently maintaining with methotrexate. What a relief not to have to use steroids so far.
Good luck with your two little ones... I can't imagine the stress of having two little guys to manage - it's hard enough with the day to day stuff without this added concern.
Good luck with your two little ones... I can't imagine the stress of having two little guys to manage - it's hard enough with the day to day stuff without this added concern.
DustyKat
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Hi jworton and :welcome:
My heart breaks for you hearing that two of your little ones have this disease...:hug:
I can't add to great info you have already received except to say I wish you all the luck in the world with your girls and I hope their remission lasts a lifetime! Good luck and I look forward to seeing you around!
Dusty. :heart:
My heart breaks for you hearing that two of your little ones have this disease...:hug:
I can't add to great info you have already received except to say I wish you all the luck in the world with your girls and I hope their remission lasts a lifetime! Good luck and I look forward to seeing you around!
Dusty. :heart:
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Welcome to the forum! I live in a medium size city and have been able to meet several people who have children with crohn's in my area. I was very open about my son's disease and I would ask my friends if they knew anyone else who had kids with IBD and I have met some great people that way. I can say it has made a huge difference for my son being able to meet other kids who share his struggles. I would just keep reaching out in your community because once I started talking about it I was amazed at how many people struggle with this disease around me and I didn't know it.
There are also several summer camps in U.S. for kids with IBD. If you google 'camps for kids with IBD' you will see lots of choices. I know your girls are probably too young for this now but maybe in the future. And I know my son was amazed you could fill a whole camp with kids who have this.
I am sure you will find/give lots of support here so thank you for joining. Let us know how your little girls are getting along, they are part of our family now.
Tiffany
There are also several summer camps in U.S. for kids with IBD. If you google 'camps for kids with IBD' you will see lots of choices. I know your girls are probably too young for this now but maybe in the future. And I know my son was amazed you could fill a whole camp with kids who have this.
I am sure you will find/give lots of support here so thank you for joining. Let us know how your little girls are getting along, they are part of our family now.
Tiffany
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Izzi was able to meet other "kids" with Crohns at our local CCFA walk for Crohns last fall. They were all older than her but it was so nice for her to talk to someone about her disease that understands (just as it is important for us parents to do).
Hope you have some luck finding someone for them to connect with!
Izz occasionally complains. However, we went to a large Childrens hospital last summer, and she and I recognized how "lucky" we are that she "only" has Crohns. There are some terribly sick children out there and she was able to see many other children with different illnesses and disabilities. It helped her to put her disease in perspective. She tells me she is thankful she doesn't have to stay in bed all of the time (there were a few super sick kids the last time she was hospitalized) or have spots all over her body (I have psoriasis) lol!
I also wonder if there is a child life specialist/someone similar who can discuss your dd medical conditions with her? My daughter sees a therapist but I wonder if there is someone who specializes in the medical field.
Hope you have some luck finding someone for them to connect with!
Izz occasionally complains. However, we went to a large Childrens hospital last summer, and she and I recognized how "lucky" we are that she "only" has Crohns. There are some terribly sick children out there and she was able to see many other children with different illnesses and disabilities. It helped her to put her disease in perspective. She tells me she is thankful she doesn't have to stay in bed all of the time (there were a few super sick kids the last time she was hospitalized) or have spots all over her body (I have psoriasis) lol!
I also wonder if there is a child life specialist/someone similar who can discuss your dd medical conditions with her? My daughter sees a therapist but I wonder if there is someone who specializes in the medical field.
Hi and welcome. It must be so difficult having two little ones with IBD. My daughter Lucy was disagnosed last year at 2.5 years so I know how worrying it is to have a child so little diagnosed with the disease and you have had that on the double!. I live in Ireland so I am not much good to you in relation to meeting up with other kids with IBD. Good luck
Hi, I totally understand where you are coming from I have a 4 year old newly diagnosed in Oct 2011 with UC. She has had a horrible time with coping. Her hospital stays were to traumatizing. Tomorrow she goes for her first clinic remicade infusion. (her other two were while she was hospitalized) I am hoping in the 3 hours we will be there that there might be someone her age that she can talk to. They have support groups at my hospital once a month just for kids to interact. I would ask your doctor if they have anything like that if they do not fear the hospital. My DD fears it, so I am hoping since we have to go every 8 weeks maybe we would go a couple times during non flu season in-between infusions. Maybe it will take the fear off.
I understand how these kids feel not being able to have someone to talk to. I don't feel as alone knowing you have gone through it. Thanks for joining.
I understand how these kids feel not being able to have someone to talk to. I don't feel as alone knowing you have gone through it. Thanks for joining.
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I don't have much to add but just wanted to say Hi and Welcome. You really have your hands full. I know how hard it is having several children with illnesses. I have one daughter with crohns, a daughter with a genetic disorder called neurofibromatosis and a son with aspergers it is tough but somehow we manage. My daughter found a support group by someone putting up signs and a friend saw them. I recommend putting up signs at your church, synagogue or the YMCA as well as contacting CCFA and asking your GI doc. It really does help these kids when they can speak with someone in a similar situation
Comforting to hear of other families
Hi! Thank you for starting this thread. My 3 year old son is undiagnosed, but Crohn's is next on the list to be ruled out. We have seen a ton of docs and a couple didn't even put Crohn's on the table of possibilities. I hate to subject my son to more testing, but looking at what his symptoms are, Crohn's seems like the best fit. Honestly, it would be great to know what causes his bouts of extreme diarrhea and vomiting (last time he had a paralytic ileus) and just knowing there are other families out there is a comfort. I wish for you and your families good health. Thanks again!
Meredith
Hi! Thank you for starting this thread. My 3 year old son is undiagnosed, but Crohn's is next on the list to be ruled out. We have seen a ton of docs and a couple didn't even put Crohn's on the table of possibilities. I hate to subject my son to more testing, but looking at what his symptoms are, Crohn's seems like the best fit. Honestly, it would be great to know what causes his bouts of extreme diarrhea and vomiting (last time he had a paralytic ileus) and just knowing there are other families out there is a comfort. I wish for you and your families good health. Thanks again!
Meredith
Jworton, me too.
Going to start the scd diet today. I wish I would have started this months ago.
Going to start the scd diet today. I wish I would have started this months ago.
