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11-19-2010, 09:56 AM   #1
AZMOM
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New to the forum

Hi! I'm happy to have found this forum. I spent a lot of time reading yesterday to decide whether or not I wanted to post. However, it seems like there are a lot of caring, supportive folks on here so I'm going to give it a shot. I routinely post on the CCFA forum and it is great but there are some folks on there that tend to be very critical and it has made me uncomfortable and frustrated at times.

Anyway, my daughter, Claire is 7. At age 3 she was diagnosed with polyarticular juvenile arthritis. We had a tough time getting her into remission but Enbrel was our miracle. 3 weeks after starting Enbrel, she was in complete remission. I'll never forget hearing those little feet RUN across the hardwood. She had not been able to run in months and I just cried and cried. :-) She started feeding herself again, coloring, running, playing with her friends. I called the makers of Enbrel to say thank you for giving us our little girl back.

Fast forward to just before her 6th birthday. We were in Hawaii on vacation with family and Claire became very ill. After 3 visits to the ED because she was unable to pee and then lost bowel control, we flew home with a foley and went to the children's hospital. After a month of testing (and a horrible C Diff infection in the middle of it all), she was diagnosed with Transverse Myelitis. TM is considered an "adverse neurologic event" and unfortunately, that is one of the black box warnings on Enbrel. So, we immediately stopped the Enbrel. All of this took place over a 2 month period.

11 days after stopping the Enbrel, Claire started yelling from the bathroom. And as many of you can guess, I went in there to find the toilet full of blood and pretty much nothing else. I know you can relate. I loaded her up and drove to the hospital. Things got much worse, 15-20 toilet episodes a day during the first few days of hospitalization, very anemic, fever, etc. So, after admission and workup, she was diagnosed with Crohn's Disease. Her Peds GI theorized that the Enbrel kept her just suppressed enough that she couldn't have a full-fledged flare and now it was, in his words "rip roaring". As far as where her Crohn's was, he said everywhere and they "couldn't believe she eats at all". She had mouth sores and then the aphthous (spell??) ulcers and granulomas from her esophagus through her rectum. And of course, the skin tags. Anyway, we were there for 2 weeks.

Because of the Transverse Myelitis event, she can't have any TNF blockers because they all carry that risk. So Remicade, Humira, etc are not choices for us. I wish they were. We started the typical course of Prednisone and 6MP. It took about 5 months to get here weaned off the steroids and the 6MP to a therapeutic level. The current doc theory (and I agree) is that for Claire, the arthritis and the Crohn's are separate.

But now......we have been OFF the steroids for a year and she has maintained remission on just 6MP. Alo, the arthritis has remained quiet - even at the worse of her Crohn's flare. We are just SO thankful this is working and also thankful for every single day that she feels great. I always say that all this autoimmune craziness is part of who she is but it doesn't define her.

We have also moved back across the US to be closer to our families so I should really probably be KYMOM instead of AZMOM. Ha.

So, there's the short version of our story. I look forward to being part of this online community. Thanks for listening.
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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
11-19-2010, 11:23 AM   #2
Rebecca85
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Welcome to the forum! Glad your little girl is feeling OK on both the Crohn's and arthritis fronts. Though I'm sorry she had to go through all that especially at such a young age. Anyway, look forward to seeing you around!
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Crohn's in the terminal ileum, dxed Jun '10

125mg azathioprine
4g Pentasa
11-19-2010, 11:51 AM   #3
Astra
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Hi Claire's Mum
and welcome

There are a few parents on here who can relate! Dexky will be on later, his boy is 11, and doing well on 6MP, and from Kentucky too!
Poor Claire, she's so little for such a horrible disease!
Glad you found us, lots of friends here for you
lotsa luv
Joan xxx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




http://www.facebook.com/#!/profile.p...4208290&ref=ts

No-one should make you feel inferior without your consent!

11-19-2010, 04:41 PM   #4
DustyKat
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Hi Claire's Mom and

Oh my goodness, your little girl has been through so much for one so young. I'm so sorry to hear that the TNF's are out of the question and I hope more than anything that the 6mp continues to work for a very long time to come. We have a thread here from a guy called Ziggy about Stem Cell Transplant that you might like to read through. Maybe in the future, when your little girl is older, it might be worth looking at...................

http://www.crohnsforum.com/showthread.php?t=10838

I notice that a couple of other members seem like they are going to have this treatment too so it will be interesting to see the results.

As Astra said Dex is from Kentucky and so is Tannersmom plus quite a few other parents on here from around the world. Please stick around and browse the forums and if you have any questions just fire away. It's fine to post in the other forums as well, just pick which one you think fits best.

Do keep us posted on how you are both doing. Good luck and welcome aboard!

Thinking of you,
Dusty
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Mum of 2 kids with Crohn's.
11-19-2010, 07:38 PM   #5
Dexky
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Hi Claire's Mom, welcome!! Well, thanks Joan and Dusty, now I don't have anything to say!! I'm in Bowling Green and yes we've had a good year almost now thanks to 6mp and Asacol. Glad you found us and I hope you stick around!!
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Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
11-20-2010, 03:37 PM   #6
AZMOM
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Hi Claire's Mom, welcome!! Well, thanks Joan and Dusty, now I don't have anything to say!! I'm in Bowling Green and yes we've had a good year almost now thanks to 6mp and Asacol. Glad you found us and I hope you stick around!!
Mark - We are in BG too! This was us coming "home" after 2 years in Arizona.
11-20-2010, 03:54 PM   #7
DustyKat
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OMG! How exciting that you are both in the same town!





Dusty.
11-20-2010, 04:21 PM   #8
Dexky
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Mark - We are in BG too! This was us coming "home" after 2 years in Arizona.
That's awesome Mom!! Have you all started searching for a local GI? We see Dr. Sari Acra at Vanderbilt. We're overall pretty happy with him, though the staff can be a little slow responding to e-mails and phone calls sometimes.
11-20-2010, 07:57 PM   #9
AZMOM
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We are seeing Dr. Acra. Just had our first visit with him in October. Nice guy! Has your experience been good?
11-20-2010, 09:13 PM   #10
gypsigirl28
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Hi and welcome AZMOM. I am glad to hear that claire is doing so good. You will find lots of support here at the forum..
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Rosemary
Grandmother of Madasin
Madasin was diagnosed at age 22 months old
with UC
11-21-2010, 12:14 AM   #11
Dexky
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We are seeing Dr. Acra. Just had our first visit with him in October. Nice guy! Has your experience been good?
We like Acra very much but sometimes their communications can leave you wanting and once the lab there botched some bloodwork. None of this is Dr. Acra's fault of course. He must be doing something right because EJ will have been dxed a year on Dec. 7 and it's been a very good year for him!! So yeah, I guess we're very happy with him!! Glad you guys are seeing him!!!
11-22-2010, 10:00 PM   #12
AZMOM
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Yeah, Dexky, I'm feeling some of that communication pain today. Ha ha. it will be okay though. I just that hell hath no fury like the parent of a child with a chronic illness. :-) I'll get is straightened out.......
11-22-2010, 10:01 PM   #13
AZMOM
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That would be I JOKE not I just.....good grief.......
11-23-2010, 05:50 AM   #14
Dexky
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Yeah, Dexky, I'm feeling some of that communication pain today. Ha ha. it will be okay though. I just that hell hath no fury like the parent of a child with a chronic illness. :-) I'll get is straightened out.......
Haha, I hope you do!!
11-23-2010, 07:38 PM   #15
Mami
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Welcome! We're fairly new around here too, but I have found so much info and solace from the fantastic people here. I feel so badly for all that your little one has had to go through. I'm glad that you seem to be on track and that she's feeling better
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Jamie, mami to Marilena 10
dx 10-7-10 Crohn's in terminal ileum

Pentasa 1000 mg
6 mp 12.5 mg
Omega 3 1000 mg
Liquid Vitamin C
Calcium tablets
Multivitamins
Probiotics
Emulsified Vitamin D 2000 IU
Hugs (daily)
11-23-2010, 09:54 PM   #16
susanfrances
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Welcome! I am new here also, but have found wonderful support and insight. Those moments when I feel like no one could possibly understand what we are going through, I look through the stories here and realize that most people here do "get it". Their combined experience is invaluable to our family!

Hope all goes well for you- keep us posted!
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Diagnosed in 2007/ Crohn's (ileocolitis) Fistulatomy with seton placement 2007, 2008
6MP 2007
Pentasa/Entocort: no luck
Humira: allergic
Cimzia: started 12/10..fingers crossed

Also, sweet, precious 9 year old daughter with hx of weight loss, diarreah, abdominal pain and cramping, CD- terminal ileum- 11/10- trying every possible homeopathic route first
11-23-2010, 11:36 PM   #17
matty
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Welcome! Also welcome to susanfrances and daughter. I hope i can be of help, myself i'm learning. This support group is very caring and informative.
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