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01-11-2012, 10:34 PM   #1
Devynnsmom
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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
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Samantha, AKA Devynn's mom


Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
01-12-2012, 05:43 AM   #2
DustyKat
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Hi Samantha and

My goodness, Devynn certainly has been through a lot, poor love......and loads for Mum to go through too!

So many of the symptoms you have described as Devynn having can quite easily fit into the extra intestinal manifestations of Crohns. Do you keep a diary of her symptoms? If not, maybe have a look at this...

http://www.crohnsforum.com/wiki/Diary-Inclusions

...a diary can be very useful at tracking symptoms and generally keeping on top of things. It is so easy to overlook things when you are living this 24/7.

Any questions you may have please don't hesitate to ask. I hope you are able to get solid answers for Devynn and long lasting relief, good luck!

It's good to have you here Samantha and I look forward to seeing you around.

Dusty.
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01-12-2012, 06:19 AM   #3
izzi'smom
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Just wanted to say welcome, and WOW! you have been through a lot! I am so glad Pentasa is working for her, and best of luck with the scope!
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01-12-2012, 09:03 AM   #4
Devynnsmom
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Hi Dusty, and thank you for the welcome. I have journaled with Devynn, but you are right when you live with this everyday things def get overlooked. I've bookmarked that page and will def use that as a tool when journaling. Her stomache is so noisy the last few days and she is VERY gassy and could clear a room. She's been like that for years. Not all the time, but def the majority of the time. I look forward to getting to know everyone. This looks like a great forum for information.
Samantha
01-12-2012, 09:06 AM   #5
Devynnsmom
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Thank you Angie,
The Pentasa has been working and the dr was very pleased. She had upped her dosage from 2 a day, to 3 a day back in Feb I belive (I would have to go into my diary) and wasn't too happy having to adjust again in Dec.
I look forward to getting to know and chatting with everyone.
Samantha
01-12-2012, 11:38 AM   #6
kimmidwife
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Hi Samantha,
I just want to say welcome to the forum. This is the best site for support. We have gained so much from everyone here. I am sorry your daughter has been through so much. My daughter was diagnosed at age 11 but looking back I think there were a lot of clues much earlier that she had something wrong. For years she complained of bad stomach pains that made her curl up in a little ball on the couch and very time we took her to the doctor he would say it is normal childhood stomach aches or stress from school. She finally got diagnosed when she ended up in the ER because she could not get off the toilet. I guess you never know what life will bring. We just try to deal with life one day at a time!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
01-12-2012, 02:49 PM   #7
Devynnsmom
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Thank you for the welcome, this seems like a great place for support and information
01-12-2012, 03:53 PM   #8
Lorimichelle85
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Welcome I am new here too!!! I take pentasa 8 pills 500 mg a day! As she gets older the dose will most likely go up. I feel so bad for her and you mom those pills are so hard to get down sometimes and taste like straight plastic. Just a little info if she ever has a BM and actually see's the pill it is quite normal I kinda freaked when I saw that. Good luck with her scope...
01-12-2012, 04:10 PM   #9
Devynnsmom
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Thank you for the welcome. Her Pentasa are the ones that kind of disolve when you add water. From what I'm seeing here there are different kinds. What we do is put hers on a spoon and add water. When it kind of disolves, we put the spoon into applesauce and she swallows it with a mouthful of applesauce. You can also disolve it in a glass of water and drink it. But its easier for her to do the applesauce method. Here is a link telling you about it. Im not sure if all Pentasa is the same.. http://www.pentasa.co.nz/TAKING+PENT...a+tablets.html
01-12-2012, 11:15 PM   #10
AZMOM
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Welcome Samantha!

J.
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
01-13-2012, 06:17 AM   #11
Dexky
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Welcome Samantha! I hope Pentasa keeps her going good. It's really one of the milder meds she could be on Good luck!
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
01-13-2012, 09:39 AM   #12
Devynnsmom
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Thank you for the welcome Julie
01-13-2012, 09:40 AM   #13
Devynnsmom
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Thank you for the welcome Mark. Yes her dr's told me Pentasa is very mild.
01-13-2012, 11:05 AM   #14
Crohn's Mom
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Hi Samantha and welcome to the forum!
My daughter was also "unofficially" diagnosed at 9 years old, and officially diagnosed at age 16.
I'm glad the Pentasa is working for your daughter and hope it continues for a very long time.
Again, welcome and it will be nice having you around
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~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
01-13-2012, 02:42 PM   #15
Devynnsmom
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Hi, thank you for the welcome
I am looking forward to meeting and talking to everyone here.
01-14-2012, 09:01 AM   #16
dannysmom
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Welcome Samantha. The 'skin coming off' sounds so awful! I hope you can get some additional treatment.
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Jeanne
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
01-14-2012, 10:52 AM   #17
Devynnsmom
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Hi Jeanne, thank you for the welcome. I hope so too. It was looking a bit better, but started peeling more yesterday.
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