Babette,

She had a colonoscopy and endoscopy done 3 weeks ago. The Gastro doc
did biopsies and 4 days later called me with the results of UC. Her
follow up appoinment is tomorrow with the gastro. I have alot of
questions for him. I am concerned now for my other daughter Alexia.
She is having the same symptoms as kristy. Right now she is doubled
over in pain.

Kristy was hospitalized for the migraines, not the GI issues. She
also has a pediatrician that we see regularly, and also the
Neurologist and Rheumotologist.

Thanks for responding. It was nice to meet you :)

Julie



--- In crohns_n_colitis@yahoogroups.com, "A Busy Child Daycare &
Preschool" <babs@...> wrote:
>
> Julie, I am sorry to hear that your daughter has this disease. I am
31 years old and just couldn't imagine a child having to deal with
it. I was diagnosed with UC in 2004, have had several
hospitalizations including a pregnancy (hospitalized during that too,
flaring). I have a lot of joint pain and even carpal tunnel that is
associated with UC. I don't think ER doctors are very knowledgeable
about the disease, generally when I go to the ER a doctor from my GI
office will come in and see me periodically through my visit. Does
your child have a regular physician? Has she had a colonoscopy and a
firm diagnosis from her GI doctor? If you haven't gotten this yet, be
sure to find one soon. Has she been admitted to the hospital? All my
ER visits landed me an extended stay constituting visits from my GI.
>
> This past summer I was diagnosed with autoimmune hepatitis, another
autoimmune disorder. Apparently, the risk for autoimmune hepatitis
increases for females with UC. I would write a list of questions to
ask the GI, that way you do not forget to ask them. Make sure he is
patient with you and willing to answer your questions to the best of
his knowledge. Good luck, and again I am sorry that your daughter has
to endure such a terrible disease.
>
>
> Babette
>
>
>
> ----- Original Message -----
> From: blueyedjuice
> To: crohns_n_colitis@yahoogroups.com
> Sent: Tuesday, March 18, 2008 9:19 AM
> Subject: [crohns_n_colitis] newbie intro (long) need advice
>
>
> Hello,
>
> I really need advice from anyone who can help me. I am writing
about
> my
> 15 yr old daughter.
>
> My daughter Kristina, was recently diagnosed with Ulcerative
Colitis.
> She just finished taking Flagyl for 2 weeks, currently on:
>
> Sulfasalazin 500 mg, 3 tabs twice daily
> Folic Acid 1mg, once daily
> Prevacid 30 mg once daily
> Shes on several meds for other medical reasons mentioned below:
>
> Kristy has been thru hell. Last August she was also diagnosed with
> Seizures, (Migraines as a result from the seizure) and also
> Psudeotumor
> Cerebri which is a fake tumor but she has all the sympotms of one
b/c
> of the build up of spinal fluid in her brain, she is in constant
> migriane pain plus 100. Of course, before we found out about the
UC,
> she has major stomach/abdominal pain, severe constipation, some
> bleeding. I had to take her to the Emergency room over 15 times
last
> year b/c of all her symptoms. It came to a point where the doctors
> werent believing her and suggested me take her to a psyhciatrist.
I
> know my child wasnt faking. She is currently missing her 2nd year
of
> school b/c of all the pain she has been thru (and still is) and
> fatigue.
> She has been having better days b/c the seizures are finally under
> control, so it helps with the migraines. Her stomach still flairs
up.
> I
> forgot to mention that Kristy has also been having major flair ups
> with
> physical joint pain. The rheumotologist says it wasnt Lupus or
> arthritis. She said it is Fibromyalgia but that diagnosis just
didnt
> sit right wih me.
>
> We have an appoinment scheduled for this wednesday with the gastro
> doc.
> Please give me advice on what to ask the doctor. I have been
reading
> several post and am shocked to know that UC can cause problems
with
> the
> kidneys, joints and what else? I am trying to learn as much as I
can
> so
> that i can continue to fight for my child. I hate taking her to
the
> ER
> and the docs dont do anything hen she is in severe pain!! No pain
> meds
> NOTHING. She cries and doesnt understand why no one is helping
her.
>
> With the symptoms I have described to you, what do u think? Is it
all
> (except the seizures) related to UC? Should I ask for pain meds?
What
> can i do to prepare for if I have to take her to the ER again. The
> docs
> wont help her....Any advice and questions you can give me to ask
the
> gastro doc will be so helpful to me.
>
> One question that I have. On 3 occasions, Kristy has screamed b/c
a
> sharp pain would hit her in the back (kidney area). The other day
she
> was fine and suddenly she was in alot of pain in the same area, it
> lasted for about 30 minutes but then went away. She also had
problems
> urinating, no UTI, she just couldnt pee. One of her meds was
removed
> b/c it is used to help people stop peeing. I was wondering if UC
> affects any of those things.
>
> Thanks for reading my post. I really need support. Im happy we
have
> diagnosis to Kristys problems but now I need to know how to fight
the
> doctors in getting her theproper care she deserves. She shouldnt
be
> in
> pain anymore. Two years is long enough!
>
> Julie
>