The Journey of a child

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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 »

Just for the record, I have never done the bladder diet. By the time I heard of it (no internet back then!), I was already doing better with my IC than people that were on the diet so I did not bother. The key to me was really increased water intake. In my experience it dilutes whatever irritants are in the urine, making the diet unnecessary. The purpose of the IC diet is to make the urine less acidic / more alkaline as acidic urine will irritate the bladder wall. So if you adhere to any part of the diet at all, it should be to avoid the obviously acidic foods, like juice, soda, citrus fruits, and tomato products. Again I think dietary changes in kids are difficult, so I just don't want you to think I am urging you to have her adhere strictly to the bladder diet, I am not.
I do still think she should be checked for a UTI.
I am very glad her itch has been improving; I think of her often.
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 »

Itch is still at a minimal. Tummy is getting to be a worse problem. She is on the meds listed previously but is having NO relief. I do have a call into her GI to see about the Gluten stool test.
We fly out to see Dr. Hibner next month.
She has been having LOTS of head aches, and shoulder/arm ache. We still have not been back to PT

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

Re: The Journey of a child

Post by pianogal »

Itching is still at a minimal
Praise God!!!!!
-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 »

T was constipated on Sat. and now she has been itching agian. Still not as bad as in the past, but itching in the clitoral area.(same as before)
She has also complained of feeling tight (muscular) in the upper thighs and calfs. She also felt tight or what she siad was buning tight feeling across what I would say would be the pubic bone area ( or maybe her bladder) IDK.
We have a PT appt. in the morning to recheck alignment and to get her opinion as to weather her muscles are tight.

Soccer started so running and warmer weather are the only changes that have been recent.
This is sure some road........But GOD is greater!
mom
mom
Posts: 181
Joined: Sat Dec 04, 2010 3:15 pm

Re: The Journey of a child

Post by mom »

PT today. She was slightly out of alignment. Therapist thought she felt tight. She had massage and realignment.
I talked to her about some incontinence, and she suggested diet changes......WE HAVE TRIED diet changes. I really think all this is connected to the pressure/entrapment of the nerve... :? I am lookin gforward to getting to talk with Dr. Hibner and to see what Loretta ( his PT) has to offer in a few weeks.
I am going to take notes from out PT here so Loretta can see what we have done.
Last night was a rough night b/c of itch , but we had a better day today.
MOM
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: The Journey of a child

Post by pianogal »

oh... sending love and prayers your way
-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 »

TOMORROW is the big day. We fly out to see Loretta and Dr. Hibner. Symptoms have still been less than ever before, but not gone.
Trusting we get some direction. Home schooling is going well. She is much better mentally not having to be at school.
Thank you for all the support of our PN site friends.
MOM
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: The Journey of a child

Post by nyt »

Good luck, my thoughts and prayers are with you. I will be anxiously waiting to hear what Dr. Hibner recommends.

I home schooled over 20 years ago. I did it for about 3 years and we had a wonderful time. I just wish that I could have done it longer. Enjoy your time doing this, it is so worth it!
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
jamiegross
Posts: 43
Joined: Mon Feb 14, 2011 4:06 am

Re: The Journey of a child

Post by jamiegross »

Good luck Mom <3
Pevlic pain 8/15/10
Diagnosed with PN 2/11
Currently taking lyrica & cymbalta, PT, acupuncture
ganglion impar block -triggered lower back and sacrum pain
botox injections- caused coccxydynia
Deviated my coccyx 6 months prior- had a horrible case of posion ivy right before symptoms began, connection?
User avatar
Violet M
Posts: 6714
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: The Journey of a child

Post by Violet M »

Hope all goes well for you and your daughter and that your questions are answered so you know what to do next. ;)
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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