The Journey of a child

[HerMajesty]

Oh, I am sorry, til Karyn pointed out that you asked can an emg LOCATE an entrapment, I did not realize what you were saying. I thought you wanted to confirm entrapment, that is to confirm that the itch was neuropathic and have a diagnosis.
I also never had the pudendal emg so I did not know it was so painful! As I have neuropathic itch in my fingers and toes, my neuropathic itch was diagnosed as neuropathy with a painless hand / foot EMG (this uses sticky pads, not needles) and my pudendal neuropathy was diagnosed by pudendal block which is also invasive but I don't even remember it due to sedation. However I do think either are too invasive for a child.
As to locating entrapment: The MRI with Dr. Potter can locate an entrapment in scar tissue or probably also a congenital abnormality impinging on the nerve, etc. It would not be a bad idea but I would not be surprised if it showed nothing because you already know she has a misaligned pelvis. Until that is straightened out I would presume it to be the cause; and this will NOT show on MRI. You would probably be surprised to find that although the PT I am sure demonstrated to you the leg length difference, it will not show up on any imaging at all. Joint dysfunction seldom shows up in imaging an imaging test is a series of still snapshots taken while the patient is in a neutral position (that is, usually lying down and sometimes standing, but almost never in flexion or extension). It cannot show movement abnormality which is what a joint dysfunction is. Dr. Potter has caught a few deviated coccyx's to my knowledge but not other joint dysfunctions, in patients who have posted on this site. And, as a deviated coccyx is almost always part of a pattern involving additional joint dysfunctions, that probably means she is missing things in those patients as well. Not to fault her: She cannot read what the test was not designed to show.

[pianogal]

I think I had the EMG done at Dr. Renney's office with Dr. Poponey in Texas. They stuck needles into my labia, with no sedative. This was very very painful. I do not recommend it. Also, Dr. Hibner and Dr. Bautrant have concluded that tests such as the EMG are of little value, due to false positives and false negatives.

For me, the test showed normal nerve functioning. Yet, I am in tremendous pain. All that test will check is if the nerve is damaged and lacking "motor" issues. But it cannot test how much pain the nerve is in. So, it will test if the nerve sends messages and how well it sends them (motor) but not how painful the messages are.

In my case, my nerve sent messages fine... ie, not so damaged as to be numb... but it still was a nerve that hurts.

Please, first do a 3Tesla MRI with Dr. Hollis Potter. Or first, see a qualified PNE PT. Or visit a PNE doctor such as Dr. Hibner.

Also, that is awesome that the diet is helping. Through my research on the forums, I have concluded that it seems some entrapments can come from generalized inflammation which causes scar tissue. For example... I read from Dr. Dellon's report (posted somewhere on this forum) that it seemed if a nerve is compressed for too long of a period of time, the body will create scar tissue in that location. So it stands to reason that if inflammation from foods in the gut not being accepted, that would cause more inflammation and over time, scarring which could trap a nerve. And from my personal experience, just a full rectum can press on a nerve creating pressure. Maybe a constipated or inflamed rectum can cause inflammation... the rectum runs by the pudendal nerve. Add that thought process to the other thought process I gleaned from a study with rats. They gave rats frequent urination issues by messing with their rectal tracts, thus proving nerve cross talk. Soon, the rats nerve functions in areas next to the urinary nerves were also affected and had issues.

With these thoughts, I propose the theory that perhaps you can keep your daughter's pain from developing further, by avoiding foods which could cause inflammation or constipation. Because perhaps her pain has not yet turned into scar tissue (unless it's a genetic abnormality or a result of some trauma). So... perhaps you can keep her pain from becoming chronic if you can manage her gut.

??

Very theoretical, but perhaps possible. Worth a try.
I apologize for how vague my memory is regarding these things I read, and I may have gotten some details wrong. I tried to find links, but only found new ones, different ones, which I posted below, but it is late and tomorrow is Christmas... sorry it's not the right links. Dr. Dellon's article is somewhere on this forum, and the article on rats and nerve cross talk is also linked to on this forum.

[nyt]

Does wearing underwear make her symptoms worse? I have a good friend whose daughter is 6 years old and complains that underwear gives her genital itch. It has gotten better over the last 2-3 months. I'll ask if she found some 100% cotton brand underwear or laundry detergent that made the difference. For almost 1.5 years she didn't wear underwear and wore mostly dresses. We have seen some naked little butt cheeks on monkey bars:lol:.

Another idea, I don't think it is a cure because from what you describe sounds like a neuropathic itch but might give her some coping techniques is hypnosis. I suggest this because my youngest son had whooping cough when he was 11 years old and he coughed for about 8 months, all the time. Then everytime he got a cold the same old cough would come back and he would cough for 2-3 months. When he was about 13-14 years old I took him to a pediatric pulmonogist that uses hypnosis on children who develop habit coughs after having whooping cough but he also teaches his asthma patients the same techniques and has had great results. After two session with this physician no more habit cough and to this day, my son is 21 years old, he uses the visualization techniques he was taught 9 years ago in other areas of his life ie ji jutsu, falling asleep and wrestling. Like I said it won't be a cure but it may give her some strategies that help her deal and cope which is very important. It would be important to find a qualified hypnotherapist if this is something you would like to investigate.

I am concerned, as you are that the exercises might be making her worse. From my own experience, they made me worse and finally experimented on my own to find what worked best. Can they give her an insert in her shoe for the leg length difference? What about water therapy? I understand about your concern of a chiropractor. For me, no PT could get my pelvis in alignment it was finally a chiropractor. It took me a couple of different PT's and by the 2nd chiropractor I hit pay dirt. My chiropractor is great and extremely gentle. I wouldn't totally discard the idea of a chiropractor if you find the right one. At my dr.'s office one of the nurses got so sick of her daughter having constant ear infections she took her to a chiropractor and with weekly treatments within a month or two, no more ear infections. So, chiropractors can treat children but just like all medical professions you have to find the right one and that requires homework.

Sounds like you are finally making head way and I am very glad to hear that. Good luck and keep us posted. Nothing worse than seeing your child struggle!

[mom]

nyt,
nice to hear from you. Not sure what I think about hypnosis. Interesting suggestion though. I will have to give that soem thought.
We did talk with a therapist about some coping skills. However the best suggestion from her was to teach impulse control. I don't believe you can just tell someone to ignore the "itch" or "pain" that they are having. It is not like she is biting her nails or has a nervous habit, she itches!
I have not ruled out a chiropractor. I have a wonderful family friend who is a chiropractor. Infact when I asked him about "PNE" he rattled off more info than I could contain. He was very familiar with the pudendal nerve, and was also aware that many Doctors do not recognize or treat this issue.
He is VERY gentle, he began adjusting me for migranes about 9 years ago. and within 6 months I was off and still am off migrane meds.
He is not in our area as we have moved but he has offered to personally call a PED chiroprator and discuss my daughters issues before we go for treatment, if we decide to do so. He has also recomended someone who practices the same kind of technique as he does, agian gentle not harsh adjustments.
PT did say something about an insert at our last appt. We meet with her tomorrow and I will discuss that further with her.
I have stopped all exercises with my daughter, and will stress to the PT my concerns. I also intend to ask her about the HESCH METHOD.

Don't know if underwear make it worse as she is uncomfortable to try not wearing them. I don't want to push her. We already have 100% white (no dyes) underwear. Have tried baby dreft detergent. But when the itch started I was using the same laundry detergent I had used on her clothes for 3 years prior and it never bothered her then. so IDK

Pianogirl, I hope to ward off that pain! Pray and believe with me girl! I am trusting that everything I am learning can help her to not get any further progressed than she already is.
We meet with a neurologist at childrens next week. I will feel him out about the 3T MRI otherwise I will be calling Dr. Hibners office and looking onto making that trip.
Pray for wisdom for the nero. here. And that he would be willing to do the 3T MRI of the pelvic region. Then maybe I could have them sent to Dr. Hibner to review???? I am hoping that b/c she is a child one of these Dr's will want to learn from her what they can to aid in there specializing of this condition. It does just affect adults, and I don't want any child or mother to suffer through this alone like we did for last 2 years.
I am thankful for the knowledge, insight, and personal stories on this forum.
I know every case is different based on the individual, but knowledge is power! And I am learning a lot, by watching and documenting my daughters infirmity, and by reading and listening to the stories of those here.
I have and am asking God to direct my path, and I trust he WILL lead me to the right Dr.'s.
I will post after PT tomorrow

[mom]

PT 12/27/10

PT today was a TRAUMATIC experience for my little 7 year old angel! She was hooked up to external electrodes to see if she was contracting and relaxing her "potty" muscles. She was very uncomfortable but the worst was peeling those things off. She NEVER wants to go back she says.( I am not sure why we did that b/c we are having NO trouble with incontinence) But the therapist siad she is very tense all over and needs to learn how to relax all those internal muscles and that could impat the pudendal nerve.

I told the therapist, about the home exercises increasing her itch. She noted that and thought that was interesting. She thought it might be a good idea to isolate them with a day or two between and see which one might have caused it.

Also pelvis still out of alignment. She did some therapy to try to correct that. She felt good about the progress with that. We did not discuss shoe inserts as I left my notes at home of questions and my daughter was so upset b/c of the EMG therapy that I was to stressed to think.
I did ask her about the hesch (?) did i say that right ? method and she was not familiar with that.

I am a little confused and not sure about continuing with this avenue of PT, and yet I am unsure about what I should specify to be our area of focus. We obviously HAVE to get the pelvis alighned. Our insurance does not cover out patient PT so I am paying for each visit. ( I feel I have the right to specify kindly exactly what I am wanting her to work on, however I don't even know what that is???!!!!)

So for now we have another appt. next week following our neurology appt.

What a deveastaing qeust to find answers, treatment and hope in the midst of such a mentally and physically debilitating infirmaty!
Today I feel helpless to keep her encouraged. She is starting to have anxiety about seeing Dr.'s I do not know what to do.
Today was definitely a bad day dealing with this.

[HerMajesty]

To be honest I think you should honor your daughter's wishes and not go back to that PT.
What she is saying about the tense muscles is that your daughter is developing pelvic floor dysfunction, which is shortened, tense, spastic pelvic floor muscles. The next step for this kind of PT is to endlessly try to relax the muscles which will NOT permantly relax if they are being yanked on by out-of-place joints. So if you stick with this PT your daughter will be seen frequently, and indefinitely, on your own dime it seems.
The difference between Hesch (yes you are saying it right) and traditional PT or Chiropractic is that it is BRIEF treatment. My pelvis was fully aligned a year ago, in 2 visits totalling 3 hours, and has never gone out of alignment since. You can look Hesch Method up on youtube to see for yourself how it works, since the PT is not familiar. As I said before if you PM me your geographic area I might be able to hook you up with somebody who can realign your daughter's pelvis in a couple of visits without all this invasive nonsense. Then if that does not get rid of all her symptoms, she could get the 3T MRI to look for additional pathology: End result would be complete information without anything invasive or humiliating. She would only need invasive work if the 3T pinpoints a definite internal abnormality.
PT's and Chiro's each have their own "bag of tricks" and only a few know how to fix what they can fix and let you move on, the rest will just play around with the situation endlessly which is not something you want to be paying out of pocket for.

[Charlie]

To be honest I think you should honor your daughter's wishes and not go back to that PT.
What she is saying about the tense muscles is that your daughter is developing pelvic floor dysfunction, which is shortened, tense, spastic pelvic floor muscles. The next step for this kind of PT is to endlessly try to relax the muscles which will NOT permantly relax if they are being yanked on by out-of-place joints. So if you stick with this PT your daughter will be seen frequently, and indefinitely, on your own dime it seems.
The difference between Hesch (yes you are saying it right) and traditional PT or Chiropractic is that it is BRIEF treatment. My pelvis was fully aligned a year ago, in 2 visits totalling 3 hours, and has never gone out of alignment since. You can look Hesch Method up on youtube to see for yourself how it works, since the PT is not familiar. As I said before if you PM me your geographic area I might be able to hook you up with somebody who can realign your daughter's pelvis in a couple of visits without all this invasive nonsense. Then if that does not get rid of all her symptoms, she could get the 3T MRI to look for additional pathology: End result would be complete information without anything invasive or humiliating. She would only need invasive work if the 3T pinpoints a definite internal abnormality.
PT's and Chiro's each have their own "bag of tricks" and only a few know how to fix what they can fix and let you move on, the rest will just play around with the situation endlessly which is not something you want to be paying out of pocket for.

I think the above is good advice.

[Violet M]

Mom,

Sounds like this physical therapist is having your daughter do biofeedback. I found biofeedback to be totally useless because if the nerve is damaged or compressed and it's sending the wrong messages it's impossible to relax the muscles. If your daughter's pelvis is out of alignment causing impingement on the nerve, all of her attempts at trying to relax may be totally useless. Imagine pressing on the nerve in your elbow where your "funny bone" is. Does it help to try to relax as long as the nerve continues to be pressed on?

We've been having the "chicken or the egg" discussion for years on these forums and it goes like this: Which happened first? Did the pelvic floor tense up and impinge on the nerve and cause nerve irritation first or did the nerve become irritated due to an entrapment and cause the pelvic floor muscles to go into spasm? I can't say what's going on in your daughter's case but for me the nerve was entrapped and caused the muscles to go into spasm. I could not relax the muscles until the nerve impingement was released. Make sense?

[mom]

Violet,
yes that makes sense. My gut says the same thing. That this kind of therapy is not helping anything. But my lack of knowledge causes me to second guess my first gut instinct.
So did you have to ahve surgery to release the entrapment?

[Violet M]

Mom, yes I did have surgery to release the nerve but I think that I have a genetic collagen deficiency that caused the ligaments to become lax and chronically strained so I could not get the pelvis to stay in alignment. The only option seemed to be to cut the ligament to release the nerve. If your daughter doesn't have lax ligaments maybe just getting the pelvis into alignment will be the answer if her pelvis will hold an alignment. If the alignment won't hold that complicates things a bit.