The Journey of a child

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Re: The Journey of a child

Postby nyt » Sat Feb 01, 2014 1:25 pm

You have quite the journey! I'm praying this new neurologist will find the answers you have been seeking.
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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Re: The Journey of a child

Postby mom » Tue Aug 19, 2014 3:00 am

8/18/2014
All of our genetics testing came back normal. So still no definite answers
We have been trying different things and have stumbled upon some interesting things

Although celiac testing was neg. we had an opportunity to have a wonderful woman stay with us to help me with eliminating GLUTEN ..... We are not 100 percent GF but what I have witnessed in my child's aprons has been
Undeniably clear.
They have DECREASED substantially. So this may be worth looking into for some of you. Maybe it has already been discussed somewhere on this forum.... But I am learning about how much inflammation gluten causes.... So where flares are concerned it is just interesting the connection I am making in our journey
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Re: The Journey of a child

Postby nyt » Wed Aug 20, 2014 3:21 pm

Mom, great to hear from you! I am glad to hear there may be something that is helping.

My mother has a very good friend that two years ago nearly died, went into kidney failure, and took the doctors for ever to figure out the problem was gluten. She is in her 70's and this is something that started for her a few years ago. At one point she was so sensitive to gluten now they could not even have it in the house. For a while they tried separate cooking utensils, plates, etc. but she couldn't even breathe in any particles without getting sick. She is almost physically fully recovered now and she can at least eat at friends houses that have gluten there without getting sick even though she will never be able to eat anything with gluten in it.

I recently saw a YouTube video by a doctor that specializes in Complex Regional Pain Syndrome and he is suggesting all his patients go gluten free for 3 months as some have noticed a considerable reduction in pain. Recently, my pelvic floor PT suggested I try it as she has found some of her patients constipation improves when off gluten. Several good books to consider reading if interested in gluten are:

"Wheat Belly" by Dr. Davis Very interesting book about the genetic changes in gluten over the last 50 years. Has some very interesting research that is sited.

"Grain Brain" by Dr. Perlmutter I have not read this book yet but my brother highly recommended it.

"Minding My Mitochondria" by Dr. Wahls This book is very interesting as she had 2nd Progressive MS, was wheelchair bound and really changed her diet and now is biking. She has some very interesting pages on how diet regulates the NMDA receptor. Has about 400 references from peer reviewed scientific journals. She is much more into diet than taking supplements. However, she does take a few supplements and she calculated doses from what was given to mice to human doses. She has a new book that just came out "Wahls Protocol" that has 3 different levels of her diet. Good book but liked her first better.

"The Disease Delusion" by Dr. Bland. I am in the process of reading this book right now. He is the founder of "Functional Medicine."

I got all these books from my local library. I know many of us have limited resources and the library is always a good place to look. If your local library doesn't have it they can order from outside their library network for you. I have done this in the past with several books I wanted to read.

Mom, you might want to check out the Functional Medicine website and see if there is an MD in your area that specializes in this. They will test for all kinds of other sensitivities to food, environment, heavy metals and everything is tailored to the individual so what would work for your daughter would not necessarily work for one of your other children.

https://www.functionalmedicine.org/

Keep us posted.
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
nyt
 
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Re: The Journey of a child

Postby mom » Sun May 03, 2015 6:23 pm

Good day everyone ,
We are still on the journey like you all.
Symptoms are still calmer ( not gone )
I am definitely finding food triggers inflammation
Which in turn erupts symptoms.
We are still trying to figure things out specific to her
Process. It is so frustrating at times ....
My heart goes out to all who are still suffering
And in pain.
This seems to define our lives at times and we just want
To give her normalcy ...
Blessings to you all
Mom
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Re: The Journey of a child

Postby Violet M » Mon May 04, 2015 5:35 am

It's been a long journey for you and your daughter. Thank you for checking in and giving us an update. Will continue to keep your daughter in my prayers.

Hugs,

Violet
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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Re: The Journey of a child

Postby mom » Thu Feb 02, 2017 6:58 pm

Good day ,

Wow it has been a long time since I have posted .
We are doing amazing considering ! Here's what we have found .
Magnesium has been a God send ! It has helped with tightness of muscles which in turn relieves pressure on nerve .
Also we have discovered she is HIGHLY allergic to aspartame ! ( so all those sugar free things thinking they are " good for us " are horrible !) aspartame was causing severe neurologic effects . Red dye also .

We have eliminated aspartame and red dye , added daily magnesium supplement and she is functioning! 97 percent ! :)
Thank you all for all the prayers and support ! This started 9 long years ago ! She had been MUCH better the last 3 years since adding mag and eliminating the other things.

We are continually praying for all of you

Mom
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Re: The Journey of a child

Postby janetm2 » Thu Feb 02, 2017 8:22 pm

Mom,
So wonderful to hear the news. Happy for your both of you!
Take care,
Janet
2007-08 pelvic muscles spasms (per colon-rectal dr.) treated by ElectroGalvanicStimulis(EGS). 6/27/10 sat too long on a hard chair- spasms, EGS not work Botox help, spine pain dr cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain started/surgery at age 21. TG gave me back enough sitting to keep my job and join in some social activities. I wish the best to everyone!
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Re: The Journey of a child

Postby Violet M » Fri Feb 03, 2017 5:14 am

Wow, that's terrific, Mom! Glad to hear your daughter is doing so well. :D

How did you figure out the allergies? Was it through allergy testing or just by experimenting with eliminating things?

Violet
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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Re: The Journey of a child

Postby nyt » Fri Feb 03, 2017 6:36 pm

This is such fantastic news! What a journey you have been on. Thank you for letting us know. Always great to hear of success stories.

Interesting about the red dye. By the time my son was 2 years old I realized red dye made him hyperactive. I told the pediatrician about it and he thought I had 10 heads. Of course that was over 25 years ago and not much was thought about the implication of food additives back then.
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
nyt
 
Posts: 1155
Joined: Sun Oct 31, 2010 3:24 am

Re: The Journey of a child

Postby jaxi123 » Sat Feb 04, 2017 1:07 am

What brand magnesium and dose age does she take
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