Health Organization for Pudendal Education

We are still having symptoms, have had another rectal burning incident. I tried topical ointment, to rule in or out outer tissue irritation. This seemed to help. So maybe the burning pain is from bowel movement . IDK . Still having itch. THIS IS SO FRUSTRATING!!!!!!!
MOM

Hi Mom,

Hows the current treatment regimen going? Is she doing PT/stretching still?

Violet

Mom, Not that I think this will solve your daughter's pelvic pain syndrome, but have you had her tested for vitamin D deficiency? My son was tested because of some recent problems he has been having with cchronic fatigue / low energy. He came up deficient, so I was reading about it. Apparently it is very common because it's a tough vitamin to get enough of, even with the fortified milk and the amount in your average vitamin supplement. When reading about the bone component of vitamin D deficiency (rickets), I was reminded of your daughter because possible symptoms include short stature and soft, pliable bones with resultant risk of bone deformities in areas including the pelvis. It's just a blood test so I thought I would mention it to you just-in-case.

Violet, we are doing minimal stretch, mostly massage of the leg muscles. Same level of irritation as the last 3 years. Summer seems to intensify the itch.

HerMajesty, Thank you so much for your input, If I could get a DR. locally on board to test for some different things that would be awesome! I think they are resistant at this point to continue with lab work b/c nothing comes back with any problems....But you are not the first person to suggest some sort of vitamen deficiancy. I wonder if I could have this done independantly?

Thanks agian for all the thoughts and prayers.....I am NEVER giving up!
MOM

It bugs me that my son missed out on being tested until age 13...then got this diagnosis by of all people my Gynecologist. I told him about my son's symptoms and he suggested some testing and predicted vitamin D deficiency before the test even came back. You would think a Pediatrician might be able to deal with something like that but no If you request a Vitamin D test from her Pediatrician on the grounds that she is small for her age and has a leg length discrepancy, it would probably be too much of a liability for them NOT to do it.

THANK GOD FOR SMALL FAVORS!!!!!

Today we went to the Dr. b/c my oldest child has mono and so the younger ones were exposed to it ( mind you I have also gotten it from the oldest )
We saw yet a different ped as there are so many that work in the office...BUT, she aksed me about the itch ( which was not why we were there) and we haven't even seen her for this....she was the one we saw for the "tear" at age 4 from the swimsuit.....
Anyway, she had looked over the info that Loretta from Pheonix had sent and asked about Dr. Hibner.....Long story short, her husband is an anesthesiologist (SP ??) and was in pain management before that....so she said" Let me talk to my husband and see if he has any suggestions"
She talked to me about nuerotin ??? or Nuerontin?? any way she def believes about PN and I am so THANKFUL.....this may seem like a small thing but it is HUGE for me!
I just love how we went for the mono thing, ( all the while we have been praying for more direction) and we end up talking to the FIRST Dr. who is willing to have a conversation about this and willing to help us find help! She is also going to send us back to the PED GYN to discuss what we have learned about over the last year ( we have not seen the GYN again since she was 5 or 6)
It will be wonderful to have a Dr. that is not 3000 miles away who is at least trying to understand what your child is going through!

So we are still on this LONG JOURNEY and today we I feel like we have moved forward.......
all of this to say also HerMajesty, I bet I could get her to test for the vitamen D defficiancy, I am going to ask her about it when she calls me!!!!!! Today is a GREAT day! And by the way NO SYMPTOMS today either
MOM

That is fantastic news !!!!
I don't know anything about Neurontin (generic = gabapentin) in children, but I know in many adults it causes cognitive changes (a friend of mine calls it moron-tin, I am trying to get that to catch on around here), such as problems with short term memory. I believe these to be fully reversible in an adult, as I went on and off the neurontin several times before deciding to stay on it indefinitely, and the mental side effects reversed easily when I was off it. But if it was my child, I would be concerned as to whether or not it could cause permanent changes in a growing brain. I am not saying it would, just that you should research it thoroughly and find all the pediatric studies you can. Neurontin was originally introduced as a medication for seizures / epilepsy, which commonly has childhood onset, so I would not be surprised if you find a lot of detailed information and studies about neurontin use in pediatrics.

Mom, what great news! Do your research with whatever medications they recommend. Remember dosages for children are different than adults. Some medications the dosing is higher other medications it is less. This will be a very difficult decision for you to make regarding medication. As HerMajesty pointed out we have a little one with a growing brain and what are the effects of the medication on this growing process. On the other, you must also consider that she will have changes in her brain from having this itch that could be permanent if the itch is not treated. But for now lets focus on the good news, you have someone on your side that is local and is willing to be "the quarterback" for your team. It is a good day and I celebrate with you!

Fantastic News!!! It's amazing how these things happen. So glad to hear someone close by is listening and trying to help.

Thanks Tracy....

QUESTION???? I have heard a little about Neurontin, and I appreciate what you said HerMajesty about beign cautious. What about Baclofen?? I am not doing anything yet, but these wer two of things the Dr. wnated to maybe talk about, she is not comforatable prescribing them but if Dr.Hibner recomends them than she (our Ped) would be willing to try them. ( of course when I talked to her I forgot to ask about the Vitamen defficiancy)

I will keep you posted, thank you so much for the support!
MOM