Worried Mom

[FLMom]

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[DustyKat]

Hi FLMOM and :welcome:

So sorry to hear your daughter is having a hard time of it, . I can't offer any first hand advice about non response to treatment but there are many here that would be able share their experiences but perhaps not so many with children. There are members here that have had or are embarking on stem cell transplants, I don't know if there have been trials on transplants in children though. You may get a better response to this question if you also post it in the treatment or general discussion forum.

My son (17) was diagnosed last December and the time taken to diagnose my son as compared to my daughter was poles apart! Sarah went undiagnosed for 18 months and ended up requiring emergency surgery (aged 14 at the time), she was essentially diagnosed on the operating table.

Matt on the other hand had a week of feeling off about mid way through last November, I'm talking really, really mild symptoms, but I asked the GP to do inflammatory markers (CRP & ESR) anyway never expecting anything would be wrong! They came back slightly elevated, they repeated them the next week and they were higher. He had 2 urgent ultrasounds then an urgent referral to my daughters GI. He did an endoscopy and colonscopy and whammo! within a couple of weeks of his first symptoms we had a diagnosis of CD on the 1st of December. My head is still spinning! :lol:

I feel your pain on the waiting game, it's the pits!

I hope your little guy gets some answers soon and they are all good, good luck and welcome aboard Mom!

Take care, :hug:
Dusty xxx

 

[AZMOM]

FLMOM - You are in a good place. We have been through several med cycles but not where you are yet. Gosh - that's a lot to deal with!! I'm so sorry she's struggling.

Dusty is right, there's a lot of good advice on this forum.......I hope you can find a better path for your daughter.

And I so know about worrying about the other sibling. My son, although growing fine, had some blood in the stool last year and I went bananas. I think you are right to pursue things with your son. The Mom's always know, don't we?!?!?!?

Let us know what is going on with you guys - we are glad you are here......

Big Hug,

 

[Dexky]

Welcome FLMOM! Having followed Dusty and Matt's journey since last fall, I'm sure we all eye our other kids a little more cautiously whenever there's the least problem. The statistics and the reality certainly seem to warrant your concerns. What are their names?

 

[AZMOM]

FLMOM - I don't want to hijack your thread but just had to tell Dusty that I LOVE the new picture.

Love to all -

J.

 

[FLMom]

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[AZMOM]

Carol - You are so welcome and NOT alone. I frequently enroll in the University of Google. But it can be a scary place! I think I'm sticking with Dr. Dusty. :ytongue: :ytongue: :ytongue:

Please let us know how things are going.

Hugs,

 

[FLMom]

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[DustyKat]

Hey Carol,

Ah nothing like commitment from a doc! :lol:

Since Sarah's bloods are going off again I personally wouldn't out the problem being Crohns related. Keeping my fingers crossed that the medication works! Geez Carol, I hope things start to settle for Sarah......:hug:

Ooooooo, we could start an obsession club too Carol! I reckon we would get heaps of members here......count me in! Seriously though, do you think it would help with Connor if you kept a diary of his symptoms? Assuming you don't already have one that is. It may help to channel some of your worries into that and I sure know from experience how easy it is to forget things when you are dealing with it day in and day out. We have one in the wiki that you might like to use as guide......

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

:hang: You're doing great!!!

Lotsa love, :hug:
Dusty

 

[FLMom]

Dx

 

[DustyKat]

It's a fine line between giving her some privacy and being in her business all the time. Oh...what to do????

Haha, I don't walk on sunshine in my house I walk on eggshells!!! AND you spend all your time looking sideways at ya kids because hey, you aren't really looking at them are you!

Their sense of normal becomes so warped which is actually a blessing in disguise, but by the time she's complaining...we're usually in trouble. We usually see her doctor every 2 weeks or so for a quick check in when she gets her meds and when he looks at her sometimes I'm like..."seriously...that doesn't hurt? how are you not complaining??"

You know I reckon that was one of the hardest things with Sarah, that warped sense of normal. I couldn't believe it when she came out of surgery and the surgeon told me the complete and utter mess her abdomen was in that she never said her pain was above a 7 leading up to it. Sorta broke my heart to think that pain had become such a constant part of her life that she learned to accept it as normal. (((sigh)))

Yikes! Better stop now, I think the pre op jitters are making me very reflective! :ylol:

Dusty.

 

[AZMOM]

Carol & Dusty - I'm so with you. I will never forget Dr. P coming out of the Claire's initial scopes after literally 24 minutes. He took off his glasses, rubbed his eyes and said, "Mrs. Eaton.....we can't believe she's eating at all" I could have puked right then and there. Claire was still denying she was in any pain at all, even while she winced. Ugh.

Dusty - Reflect all you want. This DOES NOT have to be a deja vu. We are all rooting and praying for you and Matt!

Even more hugs,

J.

 

[FLMom]

Dusty,
I just realized your son has surgery tomorrow. I'm so sorry...I had no idea...new here :eek2: Best of luck to you. I'll be keeping you both in my thoughts and prayers.

Carol

 

[AZMOM]

Yeah, Carol, Dusty has A LOT going on. She's the strongest person I've never met face to face. :kiss: I'm sure we all have her in our thoughts and prayers.

Hoping for an update soon.....

J.

 

[DustyKat]

Dusty,
I just realized your son has surgery tomorrow. I'm so sorry...I had no idea...new here :eek2: Best of luck to you. I'll be keeping you both in my thoughts and prayers.

Carol

Thanks hun......:hug: And no need to apologise!!!

Dusty.