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ICNDonna
09-22-2004, 05:15 PM
Today, 09:06 PM * #10
Howard Burkhart
Registered User
*
Join Date: Sep 2004
Location: Bay Area, California
Posts: 1



Katrina, I am new at this and it's my first post. My 13 year old daughter has been experiencing several abdominal pain for 8 months. She had a laparoscopy done in late May. Several things were discovered, one was bladder cystitis. She also had chronic appendicitis, minor endometroisis, and a few others. During the surgery, the Dr. extended the bladder. We thought surgery would have helped her, however, she is now getting worse. We are not sure if we are headng in the right direction. Her pain is in the upper right quadrant and comes like a pain spike or spasm. The pain usually continues for as short as 5 seconds to as long as a minute. It is quite severe and becoming frequent. Recently she has developed the frequency issues that seem to be common. However, her most common problem is the frequent, severe pain spikes. Is this a symptom that can be related to Bladder cystitis?

We are hoping to get referred to the pediatric urology department at Stanford University and then from there get into the adult program that deals with Bladder cystitis.

Any help or direction pointing will certainly be appreciated.

I have not spent a lot of time on the forum. We appreciate your story. You have been though a lot. My daughter has had a tough 8 months, though not as bad as yours. I am also clergy and facilitate new churches getting started in CA.

Howard Burkhart

ICNDonna
09-22-2004, 05:20 PM
First of all, I'd like to welcome you to the IC Nework. I feel really bad for your little girl. It's tough enough being 13 without having health problems to go with it. Hopefully you will be able to get a diagnosis soon and get started with treatment.

You can read more about IC in the Patient Handbook on this site. You'll find it at http://www.ic-network.com/handbook


Donna

Katrina
09-22-2004, 06:46 PM
:welcome: :welcome: to the ICN!
Howard, I did send you a Private Message. I am saying a prayer for the both of you. I told you in the Private Message that your daughter can email me anytime...but so can you if so choose. I hope your daughter gets successful treatment for everything wrong with her. (having been sick at 13) I honestly believe our bodies are more resiliant when younger (and I know I miss my doctors being my parents problem lol). You mentioned being a Pastor (my dream) and I find it somewhat ironic that at this time I am writting a sermon that I will give in November.
:grouphug: :kiss:

donutgirl
09-22-2004, 07:45 PM
Oh my goodness....I am taking a few moments right now to pray for your daughter and your family. I hope the trip to Stanford will be helpful. To answer your questions about the pain....I think it is different for each of us. My pain is constant, with elevated spikes like you mention in your post and major bladder spasms. I will keep you all in my prayers.

DIANE

Dixiefireball
09-23-2004, 02:40 AM
:hi: and :welcome: to the ICN family i'm so sorry for what your daughter is going threw I was also sick at a very young age with bladder and kidney issue matter of fact i was born with three kidneys :( they didn't find out i had IC until 2002 but my doctor said i had it for many years.
katrina is a very good person to talk to she has put all types of information together that seems to be very helpful she is a very smart loving person.
if there is anything we can do for you please let us know
we are here for you and your daughter
and care.
sending you hugs and prayers
Rhonda :grouphug: :pray:

P.S
Thank you Donna for the repost!

SharonA
09-23-2004, 05:01 AM
:hi: and :welcome: to the both of you. Please give your daughter a :kissing: and a :grouphug: from me. I am including you in that, also. I am sending you :pray: that you will find the help your daughter needs so she can get back to being a regular 13 year old. :)

amanda18
09-24-2004, 02:37 PM
Howard, I also emailed you this way you'll know my handle here as well. I've had it since fifteen and am still young with it at eighteen. It can make a young girl feel very astranged to peers and sometimes it's good just to talk to someone young going through the same stuff.

shennan
10-07-2004, 06:16 AM
my :pray: ers are with you and your daughter. hopefully you will gt to the right uro spec. at stanford.

here is the list of doc's/uro's in the us.

http://www.ic-network.com/md/doctorlistings.html#CA

i think there is someone herre on the forum who sees a ic specialist at stanford.

:hmm: cannot remember. maybe someone else remembers the persons post about the stanford ic uro guy.

if i find that uro's name, i'll post it.

well, good luck!

:cat:
shenna

shennan
10-07-2004, 06:18 AM
http://www.ic-network.com/guestlectures/chrispayne1001.html

hope this helps.

:)
shenna