O/T.update on my daughter for all my good friends

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marty1976
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Date Joined Nov 2005
Total Posts : 2045
   Posted 1/29/2008 2:04 PM (GMT -6)   
Beth had MRI today.Her heart held up well, although it did take 90 minutes for her to come round from anaethetic.The docs said that MRI is so abnormal that it may take 3 weeks before we get results.He did say that there is a lot of damage and scar tissue and he asked me if she was blind.She has a little eyesight, but docs couldn't believe that she even had this due to danage at back of brain.I think he said that back of brain looked inverted(i stress i think this is word he used)He also said that he believes that they may want to inserta shunt.There must be fluid or pressure evident if he is saying that.I wish i could go back and ask so many questions but i was just concentrating on listening to evrything he was saying.Sometimes doctors give you information too quick for us to question them.He said that there is no sign of any tumours, so that is good news.
          So she battles on as always with a smile on her face even though things are so tough right now.
          Thank you all for your support and prayers, they mean so much to me and my family.
                                             Marytu
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/propranalol



        http://www.myspace.com/martybuzz1<FONT]


tjf
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Date Joined Dec 2005
Total Posts : 3238
   Posted 1/29/2008 2:17 PM (GMT -6)   
Thanks Marty for the update. I'll send some extra happy thoughts your way! What a strong little girl you have!!!
Tabitha (Tab)

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jano437
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Date Joined Jul 2005
Total Posts : 1614
   Posted 1/29/2008 2:29 PM (GMT -6)   
Thanks for the update, I am always thinking of you and Beth. You have one strong little girl there. I will send extra hugs your way.

Janice
Diagnosed July 2005 with Pancolitis
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Forvia
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potty girl
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Date Joined Dec 2006
Total Posts : 835
   Posted 1/29/2008 2:46 PM (GMT -6)   
It is amazing what children can handle and still have a smile for you. Best of luck to you and Beth.
Rona

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carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


Red_34
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Date Joined Apr 2004
Total Posts : 23551
   Posted 1/29/2008 2:56 PM (GMT -6)   
Your little Bethyboo is such a strong girl. It's good about the lack of tumors. I will send many prayers to all you over there in Ireland.
 @--->--SHERRY--<---@
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barbl
Regular Member


Date Joined Jul 2006
Total Posts : 320
   Posted 1/29/2008 6:18 PM (GMT -6)   
Visualizing positive things for you and Beth
Dx'D in 1990. Remission 1991 - 1/2005
Both flares were in extremely stressful times in my life
Colonoscopy 10/2005 80% of Colon diseased, or as I like to say "Intestinely challenged"
*****9/2007 dumped my GI who I refer to as "Satan" New GI, new med TOTAL remission with in 2 weeks.
Colazal 9 capsules a day*****


UCinNC
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Date Joined May 2007
Total Posts : 528
   Posted 1/29/2008 7:32 PM (GMT -6)   
Marty - I know a 19 year old woman with a shunt to drain the back of her brain. She has had many surgeries, and some tough times, but on the whole she is doing really well. I actually met her when she was a college freshman at UNC-Chapel Hill, my point being she leads a high-quality life and has learned how to monitor herself for fluid in the brain. While I am not familiar with the specifics of your daughter's situation, I wanted to let you know that people can have shunts in their brains and still lead very complete lives. I will keep you and your family in my thoughts.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (used to be on 12 Asacol, don't think Asacol helped)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.


Lonie
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Date Joined Feb 2005
Total Posts : 6447
   Posted 1/29/2008 7:54 PM (GMT -6)   
Hey Marty; just wanted you to know how much you and your family are in my thoughts. Give that Bethyboo a big hug and kiss for me. She's an angel.
Carol

Remicade - will have my 20th infusion on February 21.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
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NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 1/29/2008 8:55 PM (GMT -6)   
Thanks for the update Marty...I will keep you and your family in my prayers.

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30411
   Posted 1/30/2008 3:38 AM (GMT -6)   
Marty...Beth is one amazing little girl for all she's been going through (she is blessed with the family she has).

What a relief that there are no tumours.

I hope the shunt insertion goes well....another possible reason to have it done could be to relieve pressure in a certain area caused by scar tissue.

I'm sure that you can get a copy of the report from the doctor.

Positive thoughts sent your way!
Heather
*Heather*Status: mini flare Dec 28... tapered to every second night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 1/30/2008 5:56 AM (GMT -6)   
Thanks for the update, Marty, sending you a hug for you and your family.
 
 
Dx:  UC Proctitis 2006
 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence.
 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 
Added: tumeric and probiotics.
 
 

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