The Journey of a child

[pianogal]

we use generic kirkland brand stool softener 'docusate sodium 100 mg' from costco. before my daughter could learn how to swallow it we used the liquid version of it from pedialax. it has to be diluted in a full cup of liquid and stings the throat so i was relieved when my little one learned to swallow the pill. sounds like your girl got it stuck in her throat. to rule it out though you could give her the liquid version and see if the reaction is gone or present. took my daughter a while to get how to swallow a pill.

the info on labial injury is very good to know. similar to me but i didn't itch as a child although i occasionally bumped into furniture with my clitoris in gradeschool... i always hated that...my mom might remember more...will ask her...think i may remember her saying she had to tell me to stop doing that so perhaps it was intentional but i don't remember having an itch... but i am going to think about your daughter's situation w the new info and see if any new conclusions arise... like if her dorsal nerve to her clitoris is the only damaged area a true pne surgery might not be the answer but rather a dorsal release...something i am also researching for myself. so...did a history of constipation predispose her and a labial injury set off the pain cycle or is the labial injury irrelevant. did the labial injury coincide somewhat with the year the itch began.

thank you for sharing. we are here for you.

lots of love ... from a grown up with a labial injury to your sweet little one. praying you will figure it out for her and she will never progress to where i am at b/c my sitting pain only came after a year of marriage. also to add on...surgery is a last resort and at her age recommend a less invasive solution first. ie: a labial injury could create pelvic muscle spasm which can be reduced or removed with pelvic physical therapy by a specialist... there may be a way to work out external scar tissue also to relieve the pressure causing the itch. go conservative first because she is little and surgeries carry risks to damage further and are hard to recover from.

[mom]

NEUROLOGY APPT. 1/3/11

Well it was unsuccessful to say the least.
The Dr. would not even acknowledge PNE as anything relevent.
She said she would let our pediatrician know everything "looked" ok. I siad you can't check the pudendal nerve by a visual examination. She said " I will let your Dr. know everything looks fine"
So if PNE is not real just do the 3T MRI an dprove me wrong!!!!
She then referred me to the dietician and said " some things are just a simple answer"
Do you not think I have not looked at the simple answers!? if it was SO simple then all you Dr's must be REALLY dumb b/c 20 plus medications later it has not been solved! I have changed her diet, lowered her acidity intake ( by eliminating most of the fruits she was eating) starved her of sugar for 2 weeks to try and eliminate a possible yeast overgrowth. NOTHING has worked.

I am very saddened that a Dr. will not think outside the box! I gave the neuro. The info about PN from this website, and my daughters history. All she said is " why do think this is what it is?"

Yesterday she strained to have a bowel movement, and she said her bootty hole hurt......she wanted me to sqeeze her bottom cheecks closed to stop the rectal pain ?????? this lasted for about 15 minutes. I gave her som M.O.M and today with a very watery stool she still complained of her rectum hurting. She was jumping up and down sqeezing her bottom.

I just don't know what to do!!! Don't Doctors take an oath to provide care to their patients??? Or do they just provide care based on what knowledge they were taught ( or NOT taught) in school. Are they not willing to learn and change? I mean swine flu wasn't around 20 years ago was it, but we sure check people for it now, they were willing to add that to their "box"

Doctors get it wrong! They are human, but WHY can't they acknowledge that they just don't have all the answers and TRY to look at ALL the possibilities.?
I am sorry I am just venting here. LORD HELP ME BE KIND TODAY!

[Celeste]

Or do they just provide care based on what knowledge they were taught ( or NOT taught) in school. Are they not willing to learn and change?!

Only the ones who are willing to learn and change, will learn and change. Now you know why all of us end up under the care of a PNE doctor.

[mom]

Celeste,
Does Dr. Ansell in houston do the 3T MRI?
Did you like his team?

[Celeste]

Celeste,
Does Dr. Ansell in houston do the 3T MRI?
Did you like his team?

Nope, no 3T MRI. I liked the team, however I'm not sure they treat children.

[Karyn]

Hi Mom,
I'm so, so very sorry for what you and your daughter had to experience today. It's very frustrating and disheartening to be treated this way. The majority of us have gone many, many years being treated as such, so I understand how you're feeling and my heart aches for the both of you. I can remember times when I was crying on the phone with one "specialist" or another begging for answers or at least a referral to someone, anyone with a clue. I can understand a doctor not having all the answers, but to not even provide a referral to someone who may? I'm not speaking about all doctors but I've learned the hard way; the same way you are, that there are enough out there that simply don't care. Or maybe it's arrogance? Like, "if I don't know, no one else will". I don't know ...
Please, for the sake of yours and your daughters sanity, please try to get a referral for a 3T MRI with DR. HOLLIS POTTER at THE HOSPITAL FOR SPECIAL SURGERY in NYC. Instead of going through this over and over again, allow the results of the MRI to dictate where you should be going or which type of doctor you should be seeing. Whether it's the PN or something else, at least you'll know. Is there anyone (Pedi?) who would be willing to provide you with the script?
Warm regards,
Karyn

[pianogal]

ugh, I am so sorry for your day and your daughters. been there done that cried the tears, yelled and screamed and kicked... I feel you...

I know a doc who will write a script for you for the 3tesla mri, albeit overpriced phone consults, but you can get it over the phone. although I believe the doc is useless for much else, if you'd like more info, I can get that to you. if you limit your time on phone consult with the doc to 20 min, then you can get the script for less price....

or if you make an appt w/dr. hibner, they do a 1.5 tesla mri there which shows some...

there is no time to waste with idiots. I have experienced this ignorance turned into denial so many times you have no idea that I refused to waste my time with normal docs and I pick and choose the best ones for PNE and just keep in mind you'll probably pay for a lot more, but there is no use in paying for wasting your time and your daughter's.

sounds like the constipation flared the nerve up... and then the milk of magnesia caused overstraining tightening of muscles which irritated... but you want to stay on top of the constipation and keep it at bay with stool softener, even laxatives occasionally, prunes, fiber pills, etc and liquids so that this doesn't happen again. my daughter refuses to drink and I bet yours is similar. My daughter was having an ouchy poopy this morning and it hurts so much to not be able to do anything about it in the moment of pain... but you can prevent this from happening as often by keeping the poop soft and frequent...in my personal opinion, enemas work easier suppositories.

my heart is with you...

see if you can get a PPO for flexibility to pick the best docs or if you have an HMO just plan to pay for things and don't wait for approval (sadly)... and then once you do one thing to prove a condition it will be easier to get approval for additional things... it is like hitting your head against a wall with this...

at dr. potter's office, they have an assistance program to help pay for the 3tesla mri's too if it is out of budget... on this website is a script for the 3tesla mri that you just have to have your doc copy word for word. right here:

The script is as follows.
Hollis G. Potter, MD Chief, Magnetic Resonance Imaging Hospital for Special Surgery Professor of Radiology Weill Medical College of Cornell University

The address is as follows.
Hospital for Special Surgery
Magnetic Resonance Imaging
535 East 70th Street, New York NY 10021
Basement level

Appointment Desk
Tel 212-774-7296
Fax 212-774-7295

The script should be as follows.
MRI of the Pelvis
Bilateral Pudendal nerve
1) From ischial spine to Sacro Spinal ligament beneath Sacrotuberous ligament and to the Alcock's canal.
2) Dorsal Nerve of the Clitoris or Penis especially passing through the Pubic bone.

To be reviewed by Dr. Hollis Potter:Please have it faxed to 212-774-7295 by your doctor.
and then call MRI department at 212-774-7296 to schedule an appointment.

[Violet M]

Mom,

Wow, I could swear your daughter saw the same neurologist I did except mine wasn't pediatric and you don't live anywhere near me so I guess that's not possible! But she sure sounds the same. Mine said to go see a psychiatrist and when I learned about PNE I called back to ask her about it and get this -- she actually wrote in my medical record - "Tell patient neurologists don't treat nerve problems." OK -- whatever. So go ahead and vent here. We understand.

[mom]

Pianogal thank you for the information.

I didn't know M.O.M could do that! But all day she was straining even though her stool was loose, and she kept feeling like it just wouldn't come out.
I am just at a loss here. I am going to look into the info you gave me. I will be in touch.

Thank you

[pianogal]

it's ok. M.O.M. isn't bad... it's just the unfortunate cycle of trying to balance managing stool. I learned through 2 years post surgery when I had to do all kinds of things to get myself to be regular... you will find the right balance in time. and on some days it might be wrong, but you'll find your balance again.

For me... this is how I mentally gage how much "help" I need... (everyone is different but sometimes similarities exist so I share for your mental arsenal)
1- Not enough help = straining, stabbing excruciating abdomen pains that make me nearly double over, feeling of extra pain in the rectum and in PNE related areas (a flare), unable to move bowels out, feeling of migraine headache coming on. Pain during bowel movement. After bowel movement, less pain, less headache, little to no pain anywhere.
2- Just right = bowel movements daily, some pain before BM in PNE related areas, some tingling as I feel bowels moving and getting ready to come out and little to any pain during or after BM.
3- Too much help = going too many times in one day, straining because muscles are clamping down trying to release tinier and tinier width stool or liquid stool... which means muscles are creating a smaller and smaller opening for the stool, and more pain during BM and pain after bowel movement because muscles are still tensed and tightened. The straining occurs because it's harder to push out a smaller thinner substance and M.O.M. is making the intestines contract also. M.O.M. is very helpful in right quantity... but takes time to figure it out what that amount is.

For me, I prefer options 2 and 3 to option 1 any day. It's better to fix option 1 and overdo your "help" but in time you'll find the right balance.

If stool is impacted, I've discovered that using a glove and lubrication, I can reach in and remove some stool manually. It disgusted me at first, I was very angry, but then I became grateful for it, because I couldn't push the stool out even though it was in my rectum. I don't know if this is wise or not for you to do with your daughter because your fingers are larger than hers but perhaps she could do this herself.