Does this affect children?

[HerMajesty]

I have neuropathic itch so just want to let you know, do not let anyone tell you it is not neuropathic because she complains of itch not pain. Insist on emg testing: neuropathic itch shows up same as pain on an emg.
I was in touch with the other mom, her daughter had a connective tissue hypermobility and was improving with PT and accupuncture. You can generally tell a connective tissue disorder from extreme flexibility such as a thumb that bends almost back to the wrist.
My son and i both started pelvic pain syndromes as kids (me at 14 him at 8), secondary to pelvic joint injury. In my family we injure our joints due to gait issues from genetic morton's toe. We now rig our shoes to prevent this (my daughter and I put simple morton's toe pads in our shoes, and my son uses orthotics). We had our pelvic joints corrected manually which stopped my son's symptoms but only reduced mine as I had my injury for 25 years and have secondary damage.
A friend of mine's daughter had a mild case of this (frequent vulvar irritation and itching) from age 2-5, and it turned out she was poorly aligned from a forceps birth. She was walking bent over to one side and also had headaches. When the neck injury from the forceps was corrected, she straightened up and her vulvar issues got better too...something to consider if you had a forceps birth.
Anyway regardless of cause between Kat and i you now have a list of other childhood cases of pelvic pain syndromes...she could have pelvic floor dysfunction without PN but she definitely sounds like she has something and you will have to be forceful about having practitioners take you seriously.

[mom]

What kind of doctor does an EMG?
What are the right questions to aks a PT?
Doesn't a neurologist need to be the Doctor that does the Nerve Block test I have read about? Is that a good idea?

If you think PT will help I will get started on this right away.

She does complain of abdominal pain every day without fail for the last 20 months. This seems to be getting more painful. The itch was the start of it all, she itches everday all day long. She HATES her itch and tummy ache (as she says)

She told me it was ok if i didn't pray anymore b/c it was never going to go away.....
I told her I will NEVER give up hope for God the either heal her or lead us in the direction of the Doctors who can help her. That has been my prayer for 2 1/2 years!

[Celeste]

What kind of doctor does an EMG?
What are the right questions to aks a PT?
Doesn't a neurologist need to be the Doctor that does the Nerve Block test I have read about? Is that a good idea?

If you think PT will help I will get started on this right away.

You should TOTALLY try PT on a child first before doing anything else. You won't know if it helps until you try. If it doesn't help, it will make the case that you need to keep looking for answers.

[mom]

I see you have seen the Dr in Houston. IS he good? Does he see children? Does he have a wealth of understanding in regards to this condition?

Sorry I have lots of questions.
Thanks

[pomegranate]

What kind of doctor does an EMG?
What are the right questions to aks a PT?
Doesn't a neurologist need to be the Doctor that does the Nerve Block test I have read about? Is that a good idea?

If you think PT will help I will get started on this right away.

You should TOTALLY try PT on a child first before doing anything else. You won't know if it helps until you try. If it doesn't help, it will make the case that you need to keep looking for answers.

I agree 100% percent with Celeste. Let an experienced PT evaluate your child. Most of us on this forum can help you find a qualified PT. You don't want to do anything invasive (i.e. nerve blocks) at this point. Just my opinion.

[HerMajesty]

A neurologist does an EMG. The tummy trouble makes me wonder if maybe the EMG might rule out neuropathy instead of proving it. Have you considered that she could have a food allergy instead? This could cause itch and stomach pain. Unfortunately there is some detective work to be done, but I totally agree that in prioritizing what is to be done, you do need to start with the least invasive first. A PT evaluation is a very conservative approach which might give you helpful information, if something is found to be structurally abnormal.

[mom]

We have seen a pediatric allergist. She said that itching would not be centralized to one constant location if it was food allergy. Her ithc does not nor has it ever been any where else but genitally. The tummy came about 9 months to a year after.
I have talked with somoene else on here , Pianogirl, and she said that is exactly how her's started. Itch than abdominal pain.


What is the difference between Pudendal Nueropathy and Pudendal Neuralgia ?

[HerMajesty]

Pudendal neuropathy and pudendal neuralgia are same thing, different wording. The other term you will see on here is PNE, pudendal nerve entrapment. This is used if the PN (pudendal neuropathy or pudendal neuralgia) is due to pressure from the nerve being trapped in another pelvic structure such as in scar tissue, in a muscle, between two ligaments, etc. PNE is usually the cause of PN but not 100% of the time.
If not an allergy, the tummy trouble can possibly be due to the beginnings of irritable bowel syndrome (IBS), which is a possible part of pelvic floor dysfunction (PFD)...so many acronyms! PFD can be diagnosed with a physical therapy exam and is the state of the pelvic floor muscles being short, tight, and spastic. If she has been very itchy for a long time, she will have been contracting the pelvic muscles in response to the discomfort, which can cause PFD. Or, the PFD could have come first due to tension on the pelvic floor muscles from a congenital deformity such as Kat's or a pelvic injury such as mine; and both PNE and IBS caould have been the results. The other common result of PFD would be urinary symptoms; hopefully you can get this puzzle solved before any show up!
Meanwhile for comfort, as a rare individual with neuropathic itch, I get a ton of temporary relief from topical capsacin cream...use with extrem caution!!!!! this is how:
1. buy Capsazin-HP over the counter in the arthritis section of the pharmacy. I recommend this brand as some generics also contain menthol and/or camphor which for me resulted in skin irritation. DO NOT EVER PUT FULL STRENGTH CAPSAZIN-HP ON YOUR DAUGHTER'S GENITALS, SHE WILL BE BADLY BURNED!!!!!
2. Fill a small tub such as an empty eye cream container with vaseline or diaper rash cream / ointment. add a very small amount of Capsazin-HP, maybe half an inch squeezed from the tube, and stir in very well. Apply some of the mixture to the itchy area and allow at least a couple of minutes to see if she feels any burning sensation. If she feels nothing, add a little more at a time, stirring and testing on her each time. Make sure each time, you allow a couple of minutes for full intensity to be reached before adding more.
3. There is a point at which you will get a "good burn" which will not be painful but will stimulate the surrounding nerves to provide instant temporary relief of the itch. When you get to that point don't add any more. Over time it is normal to gain a tolerance and use more capsacin in the mixture, but go through the whole testing process every time you mix a new batch, to make sure you are not going to put too much in and hurt her. As long as she gets relief from it without developing any kind of skin sensitivity rash, she can excuse herself to the bathroom and apply it as often as her itch becomes too uncomfortable. I never leave home without mine, it is my rescue and without it my quality of life would be much, much lower.

I really hope this helps her!

[Cora]

stephanie prendergast and Liz Rummer in San Francisco have worked with Children. They are at www.pelvicpainrehab.com
I remember them telling me that they are seeing young boys now with problems because they sit for hours and hours at the computers gaming so they get tense and then they also hold urine etc cuz they don't want to get up from the game. Anyway, they would be a very good place to start and talk with them.

Cora

[mom]

well we have been to PT. Found out her right hip was out of alignmnet. Sypmtoms started in the summer 2008. So almost 3 years now.
I just took her out of school to begin homeschooling as the itch is profuse and kids are making fun.
We have an upper and lower GI this coming week.
We have secured and appt. with Dr. Hibner in AZ in April. We are now trying to have the 3T MRI done in our state as ins. won't cover it in AZ.
Still just working through all of this. It is a terrible thing for anyone, but especially for a child.

So if you are a parent searching for answers PLEASE get over the discomfort of the area involved! NEVER let your child see or think that you are embarrased of them, and FIGHT for their treatment and diagnosis. DO NOT give up, it is NOT in their head, nothing is mentally wrong with your child, it is the Doctors who have a mental block. It is called lack of knowledge!
And don't EVER give up on your faith, whomever or whatever it is that you choose to draw strength from. I happen to choose JESUS
MOM