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So sad for my daughter

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Crohn's Disease
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Posted 5/3/2012 3:45 PM (GMT 0)
although I'm not surprised by this development, it still caught me short and ugh, I'm sad.  She's been complaining on and off for years about stomach aches (she's 12 now) and we got her into the local Children's Hospital GI clinic when she was 10.  At that point she had lost about 10 lb due to not eating, and she got an endoscopy.  The GI treated her for GERD with a powerful PPI, which did help.  She gained all the weight back in about 6 months, then got back her mojo and grew a bunch, started menstruating about 2 months ago.

We've been weaning her off the ppi, and she's been doing alright, but her complaints have gotten more frequent and this last week she really felt off.  Headache, stomach ache, dizzy, hot/cold....blech.  I was hoping it was just PMS, but then last night she told me she's been passing mucous in her stool every day this past week and a little bit of blood (she's passed blood about twice a year since the age of 3, and mucous randomly too).  I think she's probably lost some weight, but she's got plenty of pinch left IFKWIM.

Anyway, we were scheduled to see the GI next month but I put a call in today and I guess they'll call me back.  Their clinic hasn't impressed me yet with anything like attentiveness or rapid response, but I hope at least we'll get a lab order for bloodwork and stool samples to look for inflammatory markers.  DH, who has lived with my Crohn's for 11 years now, still does not understand and thinks the mucous and blood in her stool can be treated by returning to the ppi.  sigh.

Posted 5/3/2012 5:08 PM (GMT 0)
Hi Kazbern, one thing to try and remember, she still has you to support, love and understand what she is going through.  Hope things turn out okay.
Posted 5/3/2012 6:52 PM (GMT 0)
Sorry to hear this. I guess it is always a fear at the back of your mind. Fingers crossed for her.
Posted 5/3/2012 7:55 PM (GMT 0)
So sorry that she is not feeling well. I know you must be worried and that this is hard for a mom. Hope you both feel better soon.
Posted 5/3/2012 7:59 PM (GMT 0)
I'm so sorry. Please let us know how she does.
Posted 5/3/2012 10:43 PM (GMT 0)
Hope she will feel better soon. Praying for her:)
Posted 5/3/2012 10:51 PM (GMT 0)
Fingers crossed it isn't the disease that we all know and love, ie IBD. The worrying must be hard. I worry about my nephews developing Crohn's sometimes, what with a dad and an aunt who has it. Anyway, best of luck to you both.
Posted 5/4/2012 4:40 AM (GMT 0)
Its really nice to hear such a caring, concerned mother. She is lucky to have you :) Sending hugs and prayers your way~
Posted 5/4/2012 1:01 PM (GMT 0)
((((((HUGS))))))) I will pray for your sweet daughter. Keep your chin up, Mama.
Posted 5/4/2012 3:15 PM (GMT 0)
The pediatric GI clinic called me back about 6 hours after I called them - I described the situation to the GI's nurse and she told me she'd call back after she consulted with the DR. I asked her when that would be, and she was somewhat confused but told me it would be later that same day or the next day, which is today. I have been burned by this office before so I thought I'd make sure I understood what they were going to do!

Anyway, the nurse called me back just now and said she'd ordered blood and stool tests and scheduled us for a visit on Tuesday. Have to say I'm pleased with this response. We have switched docs because the first doc we had there was just impossible to get to - I'm liking this new doc better and better. It doesn't hurt that she's young and personable and my daughter finds her easy to talk to.

And of course my daughter's feeling better today. I hope the bloodwork will get done this afternoon and will show something of interest - I'm tired of watching her struggle with feeling so poorly and then having no way to understand what's going on. You all know how hard it is to diagnose Crohn's sometimes, and while I don't wish this on her I do want us to figure out what's going on. Perhaps it is simply migraine that she is struggling with (interesting overlap in symptoms for kids). I just want an answer.
Posted 5/4/2012 7:06 PM (GMT 0)
Hi Kazbern,

I am sorry that your daughter is having a rough time, and I know you are going to worry about Crohn's. My daughter, age 19 has lots of digestive issues too. She had a colonoscopy last year which was negative. I'm crazy about my GI, but we live in a small town, and unfortunately, my daughter was friends with my GI's daughter, and she absolutely refused to see my doctor. She has been to his house and was too embarrassed to have him look up her butt:) So I finally gave in and she saw a different GI in another group practice. I thought the second doc was a big jerk! After the colonoscopy was normal, he refused to even give her another appointment to discuss what to do next...just called it IBS and gave up. My Crohn's is in my ileum, and I have had normal colonoscopies in the past, so I was disgusted that he was unwilling to do more testing. My daughter's symptoms seemed to have settled down for now, but I can completely relate to your worries about your daughter! I hope you are able to get some answers and she feels better soon.
Posted 5/4/2012 9:41 PM (GMT 0)
I'm praying for her & you Kazbern! I hope it's not IBD but you just have to think; their are SO MANY GI diseases & conditions out there. It could be another GI condition with a cure or easier treatments. I can't say I fully understand your stress(not a mom & I'm not going to preach about what I have no business to preach on) but I do know JUST having a name to put on the problem is a huge relief just in its self! You've been a huge help to me & I know you are a huge help to your daughter! I hope to be an awsome IBD mom like you one day :)!
Posted 5/4/2012 10:46 PM (GMT 0)
Awe, thanks kf, it means a lot to get such praise for a teen. And gumby, my daughter has been dreading the c-scope and was relieved to understand that if she does have one, it will be with her new GI, who is a woman. I am sorry that the GI your daughter went to was such a bum.
Posted 5/5/2012 1:59 AM (GMT 0)
Thanks Kazbern,
I partially blame myself....I absolutely love my GI and I should have insisted that she go to him, but my daughter can be pretty stubborn. She has agreed that if her symptoms return she will agree to go to him now. I guess sometimes kids need to learn by experience. Lately she has been struggling with chronic hives and angioedema (swelling of her lips and eyes) She had a terrible reaction while in college, and spent a night in the ER needing IV steroids, epinephrine, etc. After multiple tests, the allergist believes that she has autoimmune angioedema. Soo, with one autoimmune disease, she is prone to getting others. Right now, she is healthy and doing well, but the threat of Crohn's is always looming in the back of my mind.

Let me know how things go for your daughter. I'll be thinking of her, and you too!
Posted 5/5/2012 3:55 AM (GMT 0)
Sorry to hear about this, Kaz. I hope they figure out what's going on with your daughter soon. And hopefully, it will be something less severe and easier to fix than crohn's. Take care!
Posted 5/5/2012 1:50 PM (GMT 0)
kazbern,


So sorry to hear about your daughter.

I'm sure it will help her alot both in her possible treatment and her ability to handle whatever the diagnosis is (and we're all praying it will be something easy and not IBD) that she likes the new gastro and that she's female. So that is a small comfort.



Have you pro-actively started her on any supplements, like probiotics, etc...?



I assume they'll also check her for Vit. D3 and B12?





Removed profile link from Kazbern's name above.

Post Edited By Moderator (Roni) : 5/5/2012 9:09:12 PM (GMT-6)

Posted 5/5/2012 3:41 PM (GMT 0)
InSoFla, I haven't given her any supplements. I prefer that I and my family get our nutrition from a healthy, balanced, varied diet, and she is a good eater. There are few things she dislikes and she's adventurous with flavor. She is resistant to vitamins or any other kind of regular pill unless she understands and appreciates the immediate results, so getting her to take her ppi wasn't hard since the benefits were quickly apparent. I haven't been able to get her to take calcium (recommended by all of her docs when she was on the ppi) even though I gave her the chocolate ones, so I'm not going to start down the road of supplements until we have a diagnosis. And she does get plenty of sun exposure every day so I'm not concerned about her D3. I'm not sure what blood tests they're going to run, we'll find out Tuesday!

Thanks for your concern and your support.
Posted 5/8/2012 8:18 PM (GMT 0)
UPDATE - saw her DR today. Surprisingly, the stool samples we gave were tested for infectious markers, not inflammatory. The GI said that many insurance companies won't cover the calprotectin test, so she rarely orders it. If she suspects IBD, her first choice is to scope. My daughter was not pleased to hear that.

In any case, the blood and stool samples were "normal." I forgot to ask if the blood tests included CRP, I'm betting they did not. Ugh.

The GI wants my daughter to use a stool softener and see if that relieves some of her problems. She noted that the onset of nausea coincided pretty neatly with her stopping the ppi, so we'll probably end up back on a ppi after our next visit in a month. I would be ok with that. There's a pretty solid family history of GERD on both sides, so yeah.

No IBD on her chart yet!
Posted 5/8/2012 8:47 PM (GMT 0)
my doctor never did a stool sample and all my blood work comes back normal everytime they do it. I think my crp comes back normal too but i'm not positive. I'll have to check that one. My doctor said its weird but the colonoscopy shows i def have crohn's and its active. He told me we would continue to do bloodwork to see if he sees a difference when i'm on medication but most likely i will have to have colonoscopies because that may be the only way to tell if its working for me.

I really hope that isn't the case for her too. I'm glad everything is coming back normal so far.

Keep us updated!
Posted 5/9/2012 12:03 AM (GMT 0)
My GI didn't want to do any stool testing, but I insisted so he finally agreed.

And it turned up to be normal.

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