The Journey of a child

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A's Mommy
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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,

You may want to ask your pediatrician about Miralax. This is what Dr. Hibner's office recommends for stool softening/constipation. I use it daily and it most often works--- as long as I'm not loading up on carbs/meats all day. It is expensive, however, but price is nothing compared to the health and wellness of your baby girl.

Love,

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
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: The Journey of a child

Post by pianogal »

Miralax is easier on the gut than M.O.M. for sure. Stool softener is even easier on the gut and doesn't create a dependence.
If I ordered them from easiest to hardest my personal list would go like this:

easiest to hardest:
fiber
prunes
stool softeners
miralax
milk of magnesia
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
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A's Mommy
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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 »

IMHO, if a nerve problem is suspected or involved, there is going to be a problem initiating peristalsis (movement of the bowels). I tried stool softeners by themselves for a long time, and while I was more mobile and exercising, this worked fine as the gut was "moving." However, when the pain got to be too much and I just laid around all the time, I needed something with a little more "oomph." I toyed around with Senna laxative tablets and they cramped me up and sent me flying to the bathroom. Enemas didn't work for me as I must have been too impacted and the fluid just came out and not the stool, and the only thing that worked for me were GLYCERIN suppositories. However, after my PNE got so bad, the glycerin just burned too much... glycerin suppositories act by irritating the lining of the rectum, thus creating peristalsis and forcing the stool out. Although I never tried it, I think pianogal's idea of a gloved, lubricated finger might work, but gosh, on this poor little girl? Ugh... my heart breaks.

I will see what my new pain management clinic recommends after I go for my first consult on Thursday.
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 »

I have myralax..... I just wonder if that has had any impact on the bladder being irritated?
She has been on myralax since age 2.5 daily until about age 6 when I tried to get more fiber into her and give her less myralax.
however when the itch started, she was on myralax pretty regularly.But she was also still backed up.
I will try the stool softener......also if you have a script for myralax you can get through the pharmacy and it is less exspensive than over the counter even though it is the same thing. I get big giant bottles of it with script for her.
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A's Mommy
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Re: The Journey of a child

Post by A's Mommy »

Thanks for the tip about the script, mom. I will try this with my PCP. Do you know what the script is written for... or is it just a script for Miralax?

I am praying for her daily, multiple times a day.

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
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: The Journey of a child

Post by pianogal »

if a nerve problem is suspected or involved, there is going to be a problem initiating peristalsis (movement of the bowels)
wow A's Mommy, I didn't know that! Makes sense.

By the way, A's Mommy, if you try using gloved lubricated finger removing outer impaction before an enema, the enema works way better, little leaking and much better results. I discovered this by accident this month. Need to try one more time to be sure... MOM, I don't recommend this combo yet for your little one since I've only tried this once.

Gosh, the things we do...

I am praying for you MOM and your daughter, and for you A's Mommy. Love you all!

btw, MOM, here's a link to the liquid stool softener so you can know what to look for in stores... http://www.amazon.com/Liquid-Stool-Soft ... B001FPEDZC (don't forget it has to go in a cup of juice/milk or it stings)

ps- look at this book on amazon! "it hurts when I poop" a children's book. wow, randomly found it looking up liquid stool softener: http://www.amazon.com/Hurts-When-Poop-C ... hpc_text_b
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
mom
Posts: 181
Joined: Sat Dec 04, 2010 3:15 pm

Re: The Journey of a child

Post by mom »

GI APPT. 1/5/2011

We had a GI appt today. She really did not comment about PN, but she did not disregard it either.
My daughter's tummy was tender to the touch, and she has also been complaining of feeling like throw-up is stuck in her throat.

So she is scheduled for an upper and lower GI the 1st of Feb. So now we follow up with Ped, have PT on Fri and look into a NY trip to see Dr Potter, if she even see's children. I have not called yet.

Lot's of itching yesterday and today, rained last night ????
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: The Journey of a child

Post by pianogal »

if she has the "throw up in her throat" feeling, that sounds a lot like Silent Reflux. My daughter's had symptoms like that since infant-hood. She's prayed that Jesus would take away her "melted coughs" as she calls them. (uncontrollable swallowing day and night) Reflux meds didn't help her though. Her tummy often hurts, and she has constipation.

Just found a friend whose daughter had similar complaints... clicking throat, tummy upset. so I got the same test as my friend's daughter's.

It was the Genova Diagnostics Test (urine sample). It showed in a 14 page report that my daughter is malabsorbing nutrients (especially B vitamins) and that her system is under oxydative stress. My friend whose daughter got the similar test results discovered that lowering sugar and carbs, upping probiotics, and using the medicines prescribed by the doctor along with supplementing nutrients being malabsorbed helped her daughter improve.

Already my daughter's having improvements since I started following my friend's advice, cut out most gluten and dairy and started supplementing per the Genova report. The Genova report tells you how much of each vitamin your child needs based on their urine test. It is great.

I'm still figuring out what is best for my daughter... but we have some direction now.

Here's more info:
The doctor we used was Dr. Michael Aufdemberg
Irvine Village Pediatrics
4902 Irvine Center Drive Suite 106
Irvine, CA, 92604
Phone Number:
(949) 786-5437

The test was with Genova Diagnostics ONE (Optimal Nutritional Evaluation)
http://www.genovadiagnostics.com/index. ... test&id=43

It costs only 130 bucks if you use a doctor who has a plan with Genova. If not, it can run a couple grand. So check and see if your doc participates. If not perhpas Dr. Aufdemberg can do a phone consult. He's very nice. I'm happy to talk to him for you to bridge the gap. Just let me know.

Looking forward to hearing what the next tests show for your little girl. I hope you can see Dr. Potter. We are praying for you both!
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
mom
Posts: 181
Joined: Sat Dec 04, 2010 3:15 pm

Re: The Journey of a child

Post by mom »

/PT APPT 1/7/2011

We had PT today. I had my list of questions, and was kindly prepared to not return if there was not clear plan of action for treatment.
I took in a PM i had from Kat about her alignment issues and her treatments for the PT to read. Then the thereapist that runs the clinic came in to see us. We had not seen her before. She asked if she could do some pressure points (?)
She had my duaghter lie on her tummy and she put pressure on her tail bone ( she had a name for the area...cosyx ??) She said that bone was not rotated and that was good thing. Then she put pressure on the left ishium and got a gasp out of my daughter. She asked her to compare that same area on the other side...and she was still tender but as bad....also still one leg longer than the other and he right (hip ?) is rotated. ( which means out of alignment)
Long story short. every pressure point that cuased my duaghter discomfort was along the pudendal nerve. ( i did not know this until she explained it to me)
She thinks that chronic constipation is cuasing her pelvic floor muscles to work against her. so everything is tight and that is prob. what is causing the (hip) to be disaligned.
If she was an adult she said she would do internal therapy, but she would not attempt to that on a child.
Today for the first time, someone else( besides you all on this forum) confirmed what I have felt in my gut. I was relieved much like when I found this website, to be validated! I was saddened at the road ahead. My daughter HAS been suffering, I have taken her every kind of Doctor under the sun and NOONE has given us any answers or hope; until today! Mitzi, the pelvic floor speacialist in 15 minutes said she is definitly having tenderness associated with compression of the pudendal nerve. She was great with my daughter, she was so kind to me. She explained everything, showed me the pelvic model, where the pudendal nerve is how it travels along the "sit bones" ( I have wondered what you all were refering to ;) ) and how that was where she had increased discomfort when she applied pressure...although sitting does not bother her at this point..and I PRAY NEVER will.
I am calling on the power of prayer. I can't beleive that this revelation came at such a young age for her to suffer. It may be a long road, but I know that my God has a plan, and he CAN restore her to health...he can do instantly or he can use Doctors, but I trust she will be restored!
PT again next Friday, she will do an EMG to try and see if we can see what her resting level looks like.
Just to see of those muscles are really tensed.....
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: The Journey of a child

Post by nyt »

I am so happy for you that a different PT came in and pinpointed the problem areas for you and explained the anatomy. It makes such a world of difference when you have a visual and understanding of what can be contributing to or causing the problem. At least you can move forward with some confidence with this PT. I pray that over a short period that the PT will be able to get her back into alignment and this will make a huge difference if not cure your little one. Keep us posted on the progress.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
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