Hi Julie,

I'm so sorry to hear about everything you are going through with all of your children.  I live in South Florida and saw that you are in Fl as well.  I was wondering where you lived.

 

Hi Pat!

OMG, I swear that the the doctors thought i was Munchausen by Proxy
Syndrome LOL I was looked at like i was crazy and kristy was
psychotic!!

So far i do like the gastro. He listened to everything I said and
when i mentioned my moms history of gastro problems and that i think
she had chron's, he immediately scheduled the colonoscopy and
endoscopy.

I just feel so bad that it has taken so long for a diagnosis of her
seizures and now the UC. I am not happy she is going thru this but i
am happy that we now know what is going on.

Stressed is not even close!! My son has chronic asthma triggered by
allergies to trees and grass (we live in Florida haha), my other
daughter also had an abnormal EEG and has migraines. She is now
homebound b/c of the absences and presistent migrain. Now she is
having the same symptoms and Kristy. She is in so much pain right
now. I will speak with the gastro doc and see if he can get her in
ASAP.

Thanks so much for responding. I need support. I know i cant continue
to do this alone. I will keep you updated on how the appoinment goes
tomorrow. It was great meeting you.

Julie

--- In crohns_n_colitis@yahoogroups.com, Patricia OBrien
<pattinpalatine@...> wrote:
>
> Julie: I am sorry that your daughter is having such a tough time
which is also stressing you out.
>
> I would reread your e-mail and ask the gastro doc if these health
problems are related to UC. Like Babe says, write everything down
that you want to ask te doc. I would also have all of your
daughter's meds written out as well.
>
> If you wind up not liking this doctor, look for another one and
also tell him how you and your daughter feel other medical
professionals are making your daughter and you feel like everything
is in your head.
>
> I used to think I was a hypochondriac (I have no idea how to
spell that) because there seemed to be so many things wrong with me.
I would ask the doctor if Iwas right to go to the ER and tell him
before I mentioned all the things that were bothering me I would say
things like, "You are probably going to tell me I am a hypochondriac
but...."
>
> My gastro doc told me I was right each time I went to the
hospital and that I was not a hypochondriac and that I should contact
him often to keep him in the loop with what physical problems I was
having.
>
> Best of Luck to you and especially your daughter. Let's us know
how your visit to the Gastro doc goes.
>
> Patt
> 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
>