- Joined
- Jan 11, 2012
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- 1,134
Hi, my name is Samantha. My 10 year old daughter Devynn was *unofficialy* diagnosed with IBD in Dec 2009 when she was 8 years old. She has been on Pentasa ASA ever since.
We lost my Mom in July 2011 and she has been having problems ever since. Her dr upped her Pentasa to 4 - 500mg pills daily (2 in the morning, 1 after school, 1 before bed). Saturday (Jan 7th) I took her swimming, and about an hour after coming home she told me her feet felt funny. She took her socks off and immediately panicked. The skin on her toes was loose and kind of hanging. It looked almost like a blister, but there was air instead of liquid. Within a few hours, the skin started coming off the underside of her toes. By Sun night, the skin was off of 3 toes on each foot. We went to our family dr who said it looked like a contact allergy, and gave her HydroVal cream to use 2x daily. I posted some pics on Facebook and a friend with IBD told me that it looks like something that has happened to her, and is Crohns related. I called her GI and they are in the process of booking her for another upper and lower scope ASAP.
She has had different symptoms since she was about 18 mos old. The dr's always said it was a virus, the flu...you name it. When she was 5, she woke up one day and couldn't bear any weight, she had horrible pain in her hip. I took her to emerg where they said she had toxic synovitis. They told me it could occur at any joint any time she had any kind of virus. Years later we found out she most likely did not have toxic synovitis, but that this was another symptom. Through the years she has had the joint pain, body rashes, mouth ulcers, bowel movements that could go from normal to either constipation or water in one sitting, horrible diareah, horrible stomache pains, fevers with no other symptoms, vomiting, and she lost all the skin on her hands once. At the time we thought it was an allergic reaction to pumpkin (found out she was anaphalactic), but now we are thinking that too could have been Crohn's. Before starting on meds, she had behaviour problems. I had her to many dr's who never saw what we saw at home.
She got sick in May 2009 and was rushed to the Emergency dept with what we thought was her appendix. After ultrasounds, bloodwork, xrays etc they told me her white blood count was elevated and her lymph nodes in her abdomen were enlarged. They admitted her and put her on IV pain meds etc. Lucky for us a doctor from the leading childrens hospital in our area (The Hospital For Sick Children) was doing round at our hospital. She referred us to a GI at Sick Kids and they started all the testing. She has had xrays, barium swallow, endoscopy, colonoscopy, blood work, ultrasounds and I'm sure there is probably something I am forgetting. The scopes came back as suspicious, and they gave her the *unofficial* diagnosis in Dec 2009. While we were going through the testing and millions of questions I had mentioned her behaviour, her GI dr's said kids with chronic illnesses can have behaviour problems because they are always in pain/sick etc. Within a week or two of being on Pentasa, she was a different child.
Devynn has 3 siblings, 2 sisters and 1 brother. She is the youngest. I am hoping to talk to people and gain more knowledge about this disease. I want to help my daughter and help my other children understand what Devynn is going through as well.
I am nervous about another scope, and Devynn is not happy at all. I know its for the best, as we want to figure out what is going on so we can help her. Its so incredibly hard watching your child hurt, and you can't do a thing about it. It will be good to talk to other parents, and people in general who are dealing with IBD.
Wow, I think I wrote a book! lol
We lost my Mom in July 2011 and she has been having problems ever since. Her dr upped her Pentasa to 4 - 500mg pills daily (2 in the morning, 1 after school, 1 before bed). Saturday (Jan 7th) I took her swimming, and about an hour after coming home she told me her feet felt funny. She took her socks off and immediately panicked. The skin on her toes was loose and kind of hanging. It looked almost like a blister, but there was air instead of liquid. Within a few hours, the skin started coming off the underside of her toes. By Sun night, the skin was off of 3 toes on each foot. We went to our family dr who said it looked like a contact allergy, and gave her HydroVal cream to use 2x daily. I posted some pics on Facebook and a friend with IBD told me that it looks like something that has happened to her, and is Crohns related. I called her GI and they are in the process of booking her for another upper and lower scope ASAP.
She has had different symptoms since she was about 18 mos old. The dr's always said it was a virus, the flu...you name it. When she was 5, she woke up one day and couldn't bear any weight, she had horrible pain in her hip. I took her to emerg where they said she had toxic synovitis. They told me it could occur at any joint any time she had any kind of virus. Years later we found out she most likely did not have toxic synovitis, but that this was another symptom. Through the years she has had the joint pain, body rashes, mouth ulcers, bowel movements that could go from normal to either constipation or water in one sitting, horrible diareah, horrible stomache pains, fevers with no other symptoms, vomiting, and she lost all the skin on her hands once. At the time we thought it was an allergic reaction to pumpkin (found out she was anaphalactic), but now we are thinking that too could have been Crohn's. Before starting on meds, she had behaviour problems. I had her to many dr's who never saw what we saw at home.
She got sick in May 2009 and was rushed to the Emergency dept with what we thought was her appendix. After ultrasounds, bloodwork, xrays etc they told me her white blood count was elevated and her lymph nodes in her abdomen were enlarged. They admitted her and put her on IV pain meds etc. Lucky for us a doctor from the leading childrens hospital in our area (The Hospital For Sick Children) was doing round at our hospital. She referred us to a GI at Sick Kids and they started all the testing. She has had xrays, barium swallow, endoscopy, colonoscopy, blood work, ultrasounds and I'm sure there is probably something I am forgetting. The scopes came back as suspicious, and they gave her the *unofficial* diagnosis in Dec 2009. While we were going through the testing and millions of questions I had mentioned her behaviour, her GI dr's said kids with chronic illnesses can have behaviour problems because they are always in pain/sick etc. Within a week or two of being on Pentasa, she was a different child.
Devynn has 3 siblings, 2 sisters and 1 brother. She is the youngest. I am hoping to talk to people and gain more knowledge about this disease. I want to help my daughter and help my other children understand what Devynn is going through as well.
I am nervous about another scope, and Devynn is not happy at all. I know its for the best, as we want to figure out what is going on so we can help her. Its so incredibly hard watching your child hurt, and you can't do a thing about it. It will be good to talk to other parents, and people in general who are dealing with IBD.
Wow, I think I wrote a book! lol
