Health Organization for Pudendal Education

Mom, I've tried baclofen. It didn't do much for symptoms and just made me feel tired and weak. It's often used for people with cerebral palsy or MS who have muscles spasms. I can't say it really helped me at all.

Violet

Violet, thank you for the feedback.

STATUS Well we are approaching turning 8, she started having the itch at 4 ( a few months before turning 5).
She very much wanted to return to school, so we have begun to try this. After 3 school days, she began complaining of tummy/pelvic pain. She has complained of this everyday since Friday. (She has not had tummy pain since March/April) So I am wondering if the sitting/standing is affecting her. Her teacher does have a couch in her classroom so she can lay if she needs to and her teacher is trying to work with us and be aware. I am observing and proceeding with caution. I may need to pull her again and homeschool. She loves school though....but I want and need to make decisions that help her physical well being.
Anyway, we have not tried any meds, still researching those and just keeping the option open but not prepared to make a decision at this point.
Still waiting on appt. with ped GYN agian since seeing Dr. Hibner so we can take the inof to her and maybe have another local Dr. on board with treatment willing to work with Dr. Hibner.. Hoping and trusting this help to raise awareness for children!

MOM

Mom, my heart goes out to your little girl. What a heavy burden she (and you) have to bear. She's very lucky to have a mother who will listen to her and not just brush it off. Keep your courage up.

Well we are still in school.......itching a lot. We are traveling to the midwest and will be seeing a wonderful freind who happens to be a chiropractor. I will consider heavily his opinion and thoughts. He is amazing and has much knowledge and understanding about PNE. ( I was suprised when I asked him if he had heard of it and he told me yes) Also considering the MRI with Dr. Potter (?) in NY just to see what it shows......as much non invasive stuff as we can do.....PRAYING WITHOUT CEASING!!!! (for my little girl and all of you)

Violet thank you so much for your encouragement
MOM

Enjoy your travels and a break for all. This is fantastic that you have a chiro friend who you trust. Hopefully, there will be some insight or treatments he can do to help. A MRI with Dr. Potter sounds like a very good idea. Have you emailed her to make sure she can image the pudendal on someone that young. I don't know the limitations for the size of nerve she can see and if she thinks the clitoral branch might be too small on someone as young as your daughter. I would just hate for you to travel that far and find out that her nerves are too tiny yet for her to see them on the MRI. Also, the technician is wonderful and ask if you can speak with Dr. Potter after the MRI. If she is available she will look at the MRI with you.

You, your daughter and family are always in my prayers.

CHIROPRACTIC EVALUATION 8/14/2011
We traveled to Iowa to see a Chiropractor (as well as a little R&R) He x-rayed to see if there was anything obvious with her alignmnet. Nothing significant. She does have VERY mild curvature of the spine, but her hips are level. He adjusted her GENTLY on both sides and with in minutes she had rectal itch. I followed with leg massage to calm her down and after about 10-15 minutes she was asleep and not itching.

Two days later after discussing this with Dr. Jason Villalobos (the chiropractor) He isolated her next adjustment and only did the RIGHT SIDE.
While she still had itch she did NOT have rectal itch this time. I thought that was interesting...... We did not stay an extra day to try the left side.

He did make a phone call to a pediatric Chiro near us and discussed at length the condition we are dealing with and asked several questions about the technique he uses. So we are going to follow up at home with this. We will proceed cautiously and only with gentle adjustments to see if this helps.

Dr. Jason was wonderful, as well as very knowledgable about the pudendal nerve. I gave him the site here to check out.

Our PED gave us a medical excuse for sitting for the school. so this is GOOD

Not healed yet, but at least We are working with Dr's who are trying, and willing to research, and compassionate. WE ARE NOT CRAZY

NEVER ceasing to trust and believe!!!!
MOM

It does take time to find the perfect team of healthcare professions that work. It sounds like you are making great headway in finding a group to work with your daughter. That is fantastic! Prayers sent.

She wants to ride her bike, and take dance, and do gymnastics......AND SHE CAN'T!!!!!
Her symptoms are more calm, but man this is SO frusterating
Stress levels have gone up as she has been dealing with little girl "drama" at school. It amazes me how that has impact on her itching.
Maybe I should have kept homeschooling?.?
Mom

Tough choices! Have you thought about getting her some counseling to help her deal with the stress at school? It might give her some coping strageties and reduce the stress induced itch. Sometimes, even at this young age, if it comes from someone besides mom or dad they are more willing to listen. Been, there, done that.

Prayers and hugs sent your way.

Forgot to add, my son has thoracic outlet syndrome but he was a teenager when he was diagnosed. He was in 9th grade, up and coming trumpet player. Had to give up player trumpet, couldn't do sports, couldn't even carry a book bag between classes. By the time 11th grade came around he said to the family dr. I want to play lacrosse. I thought it was a bad idea but the family dr. told him, you give it a try. He did and he took alot of heat from the coaches because he couldn't do but a few push-ups without flaring his arm. He basically was a water boy but he was so happy just to be with his friends. After that spring sport there was such a change in his mood. He started going to the gym and working out and modified his work out program not to flare his arm. He learned how to manage his own pain and activity level. It was hard for me to keep my mouth shut but now 10 years later he has a brown belt in jujitsu, is a personal trainer, and back in school as a RT.

Now this is just a thought because my son was a teen when his problems started maybe try and let her do an activity but keep it at a very small time frame for activity. I can understand not the bicycle but maybe she could manage the dance in short bouts? If you talked with the dance teacher about how she can only do a little at a time getting her involved in something gives her some control and would do wonders for her mental health. I think my son getting involved in something was so big for him that it wasn't until I could look back on the experience that I see what good it did for him. Maybe it would be the same for your little girl. Just a thought because you know your daughter.