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Old 02-27-2007, 07:02 AM   #1
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Exclamation vascular malromations found in colonoscopy of 8yo daughter...

my daughter is 8 years old. shes complained of generalized stomach pains for several months. up until december she only had the pains a few times a week. I popped her with some tums. but the pains became more frequent to the point it was everyday. she also started having dizzy/fainting spells and she leaks urine from time to time. shes also been running very low grade temps between 99. 6-100. 6. her norm is 98. 6. and shes lost about 7 pounds giving her a bmi of 10.

I took her to the dr who ordered a sonogram. turns out she was full of poop. we pushed fluid and fiber but she became anorexic and had virtually stopped eating. about a month ago she had a 5 day Diarrhea spell. this time we were sent to a pediatric gastro dr

he explained that since she was SO backed up that basically each time her intestines contracted, all they were doing was squeezing the fluid out of her stool and it was passing as Diarrhea. he gave us miralax with instructions to clean her out until she had watery stools and then use a daily dosage of it to keep her going.

we cleansed till we got watery stools. we were told it didnt need to be clear, just watery. I ended up calling the dr on-call because the watery stool she finally passed was the color of dark spinach. I was worried it was blood. the on-call dr assured me it was due to it being old stool and the color was okay.

the pains continued until she begged me to call the dr back. at this pojnt he scheduled an EGD and a Colonoscopy. we all, dr included, are shocked by what we found.

the EGD showed edema and granularity in the 3rd portion duodenum as well as Gastritis/erosions in both the body of the stomach as well as the fundus. she is being treated with a daily prevacid tablet for the Gastritis but so far weve found no explanation for the edema and granularity.

the Colonoscopy went very badly. he found several unspecified findings as well as some vascular malformations that he said were enlarged blood vessels. he made very little progress during the procedure because each time he moved the probe a bit further it was start to bleed. he only made it as far as the very left side of the distal transverse section before he was unable to go any further. he is unsure if theres are just many more of the vascular malformations or if the walls have narrowed or what.

after the procedure she passed about a litre of blood and was hospitalized for 4 days. she has since undergone a barium CT which showed everything to be normal. this was done within hours of the Colonoscopy. 2 days after her release from the hospital, she underwent a small bowel series with barium, looking specifically for ileitis. everything in this test looked normal as well.

shes been tested for celiac, crohns, h pylori, a clotting disorder, and many many other things including cancer. all negative. her cdc showed she is slightly anemic and malnourished but thats to be expected since shes barely eating. one thing that struck out as a big red flag was her sed rate which went from 12 at admittance to 51 at discharge.

I have to call tomorrow to set up an appointment for an MRI to see if it will pick up anything on the malformations or to explain why the dr couldnt get passed that first corner during the Colonoscopy. she will also have a KUB to make sure shes not getting backed up again even though shes still taking her daily miralax. and we're going to run another series of blood tests to see if her numbers are falling back into place and expecially to see if her sed rate has dropped.

sorry for the lengthy post but I wanted you to have as much details as possible so you can give a better opinion. ive included links to the images I was given from her EGD and Colonoscopy in hopes that someone will maybe know whats going on. any help would be greatly appreciated. thanks in advance.

thanks again for any help you may be able to provide.

Last edited by moderator2; 02-27-2007 at 07:46 AM.

 
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Old 02-27-2007, 07:43 AM   #2
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Re: vascular malromations found in colonoscopy of 8yo daughter...

i am desperate. the vascular malformations are the most diturbing and since i cant show anyone what they look like... let me try to describe.

you know those little blood vessels that are supposed to look like little red squiggly lines in the tissue? well, my daughters looked like they were blown up like balloons. round and full. and bled easily.

i just wish someone could see it and maybe it would look familiar to someone.

i just so desperately want someone to tell me whats going on. or give suggestions. or something... *wiping tears*

Last edited by moderator2; 02-27-2007 at 07:47 AM.

 
Old 02-28-2007, 01:06 PM   #3
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Re: vascular malromations found in colonoscopy of 8yo daughter...

Since no one else responded, I will say I think your' child should be admitted to a children's hospital and evaluated until a proper diagnosis is made.
I am in New England and the Boston Children's Hospital comes to mind. In other parts of the country there is St Judes Hospital and many others for children.

We are not allowed to make "arm-chair" diagnoses here so no one is going to try to do so. A friend of mine suffered from Lupis and she had problems with blood vessels becoming inflamed. I'm sure the doctors would be looking for things like this.

Please get your' child to another doctor and advocate for agressive diagnostic testing until the problem is resolved.

drive-south

 
Old 02-28-2007, 01:26 PM   #4
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Re: vascular malromations found in colonoscopy of 8yo daughter...

thank you for the reply. im really not looking for an arm-chair diagnosis. i just hoped that maybe someone else had seen something similar to what my daughters blood vessels/vascular malformations looked like.

i have searched and searched and searched and searched for any and all key words i can think of trying to find blood vessels that look like hers. none. zip. zilch.

so i found your board and it had a forum for bowel disorders and i thought certainly someone else has seen what my daughter has. i just cant believe i really cant find anything that looks like hers and that no one else has either. i guess im just having trouble grasping that.

we are still undergoing on-going testing. this past monday she had a new blood panel series drawn and just today she had an MRI that went horribly wrong trying to give her the contrast. she blew 3 veins and they were only able to get in 1/2 the contrast but, alas, i have strayed...

like i said, i just hoped maybe someone else had seen something similar cuz i cant find anything anywhere remotely resembling what is inside my daughter. but it would be hard to say if anyones seen anything similar since i cant show the pictures.

but thanks for at least responding. i am currently awaiting a referral to johns hopkins, top notch in our area, blowing childrens hospital away. BUT thats just the ones in our area and im much more south than you and your Childrens may be top notch for your area.

thanks again for your response.

 
Old 03-01-2007, 10:16 AM   #5
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Re: vascular malromations found in colonoscopy of 8yo daughter...

Hi There,

I really can't offer any information on what is going on with your daughter. I can only offer emotional support for what you are going through. My daughter had kidney issues from 9 mos until 2 years that left her very tiny, not wanting to eat, many hospitalizations, DR's, specialists, tests, ect. I know what your going through and how heart wrenching it is to see your little girl going through something like this. Johns hopkins is a wonderful hospital..They finally diagnosed my daughter and got her the help she needed. Hopefully you will get to the bottom of what is going on. Always be strong, and always push for your daughter. You are her only advocate. Her story brought tears to my eyes and brought back a lot of memories from what my daughter went through. My daughter was miraculously cured from a disorder that the experts have never ever seen just "diappear" I prayed everyday that she would just get better. It is just not fair for our children to be sick. I wish you the best and will pray for your little angel and your family. God Bless
Kelley

 
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