The Journey of a child

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mom
Posts: 181
Joined: Sat Dec 04, 2010 3:15 pm

Re: The Journey of a child

Post by mom »

we are on our way to being cleaned out...as we prepare for the upper and lower GI.
The process of elimination :x :x GRRR!
She is STARVING today!!!!!( b/c of the liquids for the GI) Itch is terrible ( i may break down and try the capsazin that HerMajesty recomended.)
Rained last night....always seems that when rain is coming itch gets worse..I know I have said that a hundred times, and I have had a lot of comfirmation that the barometric pressure increases neuropathy symtoms and pain.

Our first homeschool day. We worked on reading, writing, spelling :lol: ( god help her LOL)and math. she did great, I winged it great :D
and she is not having to suffer with itch in front of a class full of kids. So today is good even though symptoms are elevated.

I will let you all know about the GI. I am anticipating that it will show nothing, b/c it is the pudendal nerve, however I don't want to miss anything either.

Booking flights today as we paln to see Dr. Hibner, also goign to call and schedule appt. with Loretta ( Dr. Hibners' PT)
Hope you all are having a blessed day :D
MOM
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A's Mommy
Posts: 447
Joined: Fri Sep 17, 2010 12:46 pm
Location: Pennsylvania
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Re: The Journey of a child

Post by A's Mommy »

Mom,

Will be praying for you and T as always. Poor T. It's hard to fast. I almost went nuts fasting for my TG surgery w/ Hibner. I eat all the time.

Having right sided pain today. Please pray against all plots and plans of the enemy.

AM
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
mom
Posts: 181
Joined: Sat Dec 04, 2010 3:15 pm

Re: The Journey of a child

Post by mom »

2/1/2011
UPPER & LOWER GI

We had the upper and lower Gi today. Everything looked good. Biopsy's will take about a week.
Strangley when the anesthesia was taking effect and when she was coming out she had no itch. Then when she was come to enough to be worked up.....and let me tell ya she was grouch :( the itch was really really bad for about 2 hrs and then calmed back down to normal symptoms.
This may or may not be anything I am just making all associations I can at this point.
She is home resting now. :)
MOM
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: The Journey of a child

Post by HerMajesty »

Mom, I'll bet you already said this at some point but instead of reading through pages and pages i am going to ask...Where in the abdomen does she have pain?
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
mom
Posts: 181
Joined: Sat Dec 04, 2010 3:15 pm

Re: The Journey of a child

Post by mom »

HerMajesty,
She does a circle around her mid belly area. Her hands go below and right above her belly button. We are talking about a 38# 7 year old.
little little.....she occasionally tells my husband and I that she is having shooting pains from the buttox down the back of her upper thigh...we had always just told her in the past it was growing pains, but she would say it hurt pretty bad. IDK, it is uaually on one side when that happens.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: The Journey of a child

Post by HerMajesty »

the pains from the buttock down the back of the thigh sound like sciatic nerve. I wouldn't be surprised if the lower abdominal pain originates in the pelvis as well (referred pain).
Wow she is tiny! My own daughter is 6 1/2 so I have some basis for comparison. Does her pediatrician think she is a natural height and weight for her genetic build, or that her physical problems have been impacting her nutrition?
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
mom
Posts: 181
Joined: Sat Dec 04, 2010 3:15 pm

Re: The Journey of a child

Post by mom »

HerMajesty,
Her hieght and wieght are on her normal 3 percentile curve that she has always been at. However I did recently take her in to have that checked as I have seen a decline her desire to eat as she has been dealing with the abdominal/pelvic (?) pain.
Now that I am homeschooling I monitoring her eating much closer. I think when she was at school she would take a bite and be done. An I would have to fight to get her to eat breakfast and a reasonable amount of diner.
mom
Posts: 181
Joined: Sat Dec 04, 2010 3:15 pm

Re: The Journey of a child

Post by mom »

Today when she went to the bathroom ( just urine) she told me that her rectum was hurting.

She is also complaing of alot of "tummy" pain today ( agian I feel this could be pelvic pain)

Does anyone else have this sensation. It has quit stinging now ( about 10min).
MOM

edited by Moderator 3
miracle@work
Posts: 7
Joined: Fri Jan 21, 2011 10:45 pm

Re: The Journey of a child

Post by miracle@work »

Hi Mom, how it breaks my heart to read what your little one is going through. Yes, while most of my symptoms where vaginal, my symptoms at times could be rectal and would sting/burn and then go away. It was as if the symptoms would move from one area to another. I will also share with you that my days were bad and worse. Never good days bad days. The worse days where the ones that I had pains/symptoms in more places than one in pelvis and also sensations going from my left arm all the way down a line to my left leg almost to my foot. This included breast, stomach, abdomen and inner thigh. I am not sure what kind of tummy pains she feels. Mine were more of a tingly, distracting nerve sensation. As you probably know by now nerve pain manifests itself differently in different people. I am not sure if you have ever had nerve pain or experienced an exposed nerve from a tooth. But the feeling for me is much different then muscle, joint or bone pain. This goes right thru you. My pains were worse on the days I had more joints out of alignment and muscles tight. The barometric pressure and hormones before menstrual cycle also caused increase in symptoms and level of pain. Both of these also affected my joints. Meds did not help me. My only relieve came from laying down, taking a warm bath or floating in a pool (and that was only temporary relief). I shared with you where my cure came from in earlier posts. Cant wait to hear how your daughter gets hers. I continue to lift you both up in prayer as He guides you to the best treatment for a cure. ~miracle@work

edited by Mod3
mom
Posts: 181
Joined: Sat Dec 04, 2010 3:15 pm

Re: The Journey of a child

Post by mom »

miracle@work,
Thank you for your reply. if there was anything edited that I should know would you PM me? Interesting what you say about achy in different places...every once in a while she complains of "achy shoulder" or "achy thigh"
Thank you for your continued support.
Mom
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