The Journey of a child

[Pelvis Stressly]

Anytime mom.
And again, I hope it's a moot point and that the physio has a positive, lasting effect.
PS

[pianogal]

She does experience abdominal pain, headaches, upper thigh aches, and some shoulder ache /pain.

- I found headaches for me directly tied to pressure from dairy products. Perhaps some food is doing it for her.

Also when I let her ride her bike her itch became worse, so I need to egt her that special seat.

I wouldn't let her ride her bike at all... period. Get her a Razor scooter or something. If you get her the special seat for the bike, no more than 5 minutes at a time riding if you must, and no more than 15 minutes per hour. I still think that will cause damage.

And how about this? Try avoiding all sitting for a month. ALL sitting. She is at home. Have her slouch and do her homework on the couch. The relief of pressure on the nerve over time could give it a chance to heal on its own, but the bike riding causing pain shows that all sitting is causing some element of increase in her pain. So no sitting could give time to heal, however most likely a scar is the ultimate culprit and this will only give temporary relief... however it could prevent increase in pain and problems. I still think it's important.

I think the dorsal block could be quite beneficial, also the surgery with dr. aszmann looks promising since her symptoms are primarily clitoral. If ever a surgery were to be done for her, that would be my first bet. Thank God the trip went well and that the dorsal block if it's done will be done under sedation. Also, what about a 3Tesla MRI with Hollis Potter?

Praying for you still. Love you!

[mom]

YOGA.......
Ok we tried yoga last week, she was in a lot of pain while trying to do very minimal leg stretches. Her aductors, abducters, hamstrings are SO tight! She can not bend over and touch her toes. When trying to stretch it pulls in the area where your underwear line would be ( not sure what muscle/tendon this is) Anyway what little we did do made itch worse, so now I have been doing heat and massage for the last 6 days.
I know she needs to relieve the tightness of these muscles, I am just seeking direction on the regimine that will aid releif and not make things more tense
MOM

[HerMajesty]

YOGA.......
Ok we tried yoga last week, she was in a lot of pain while trying to do very minimal leg stretches. Her aductors, abducters, hamstrings are SO tight! She can not bend over and touch her toes. When trying to stretch it pulls in the area where your underwear line would be ( not sure what muscle/tendon this is) Anyway what little we did do made itch worse, so now I have been doing heat and massage for the last 6 days.
I know she needs to relieve the tightness of these muscles, I am just seeking direction on the regimine that will aid releif and not make things more tense
MOM

Mom you are a mother of other children too so I am sure you would know not to expect this in a little girl. I just have to say that I understand that Dr. Hibner thinks highly of Loretta and that she sounds like she has an excellent bedside manner and means well, but when I read, "Loretta does not think the SI joint has anything to do with any of this, she is young her ligaments and joints, and bones are still growing so some give is completley normal and to be expected at this age.", I just cringed. I don't see how it can be true from what you describe above, that her joints are normal.
I am sorry, I don't want to belablor a point I already made a long time ago and then have tried to just butt out, but all this evidence of structural damage and they just want to focus on the dorsal nerve ? I went through this as a teen, had the headaches, had the pelvic pain, but all the Doctors wanted to do was focus on my bladder wall because to them that was the part with lesions, so it was the only part that mattered.
I know it is hard when everybody is giving you a different opinion and different advice but I just want to say, please take a step back to look at your child who has, in addition to a pelvic neuropathy, bladder / bowel problems, abdominal pain, headaches, and muscle tightness of the legs and back...this is a problem of alignment of the whole body.
Sorry I know I have made that point before, it is one that is important to me but I do not mean to hammer you with it and will try to butt out again. Just know I think of you and your daughter often, even when I don't post. I am praying for the very best for you both.

[Violet M]

Just wanted to add to what HM said about Loretta's advice. I do not agree that stretches are good for people with tight muscles if there is a possible nerve compression/entrapment. I am just saying this from my own experience because stretching is what pushed my discomfort over the edge into full-blown constant pain. If stretching is causing your daughter pain you may want to re-think your treatment plan.

[mom]

HerMajesty and Violet,
Thank you for your input and prayers.
HM I really appreciate any thing you have to suggest ( I value your opinion) as well as others. I do not take your opinion as pushy, I am trying to get a grasp on this too. So I appreciate all angles....
I do know that when her bowels get backed the itch is increased! I have had to double up the myralax to get her emptied for two days and then back to normal dose. We have not done any thing exstensive with stretch since the increase symptoms. I have been doing 10 min maybe of gentle leg stretches and massage, and heat.
There is such a fine balance of what can irritate with PN ( as you all know). I do feel stretching, GENTLE stretching can be helpful, but I am NOT prepared to make her do anything that could make things worse as she is so young and I am not in her head feeling what she is feeling. I am not prepared at this point to do any nerve blocks as Itch is her primary aggrivation. ( she does have abdominal pain. head ache, upper thigh to knee ache) But it does not keep her from functioning.) Her itch is a nousence yes, but homeschool has helped the " dealing with mean kids" thing, so when she is old enough to make some of the decisions WITH UNDERSTANDING we will discuss procedures.
Let me also say thay Arizona PT has been in communication with our Yoga instructer, and both are comitted to helping and adjusting. Our Yoga instructer is a wonderful lady and she has taken the time to get on here and look at the different stories and research this conditon as well as ask Loretta's advice about what is appropriate for PN where yoga is concerned...( MAYBE A BREAKTHROUGH....if we could get PT's Dr's and others in the communication loop together we may have better advance... IDK just a thought)

I hope if there are other parents of kids you will post! Don't be embarressed by this, your child NEEDS you to fight and learn for them.
Thank you for all the continued support
MOM

[mom]

OMG!!!!!!
Tonight after having some looser stool, she had TERRIBLE rectal stinging. She was walking with her buttox sqeezed together to avoid the sting, but no releif. The only thing that releived it at all was lying down and then she still had stinging but not as bad. She had several bowel movements today all of which intensified the sting. I feel so HELPLESS!!!!!!! This is so awful to watch my little girl suffer, and not have a Dr. around the corner that understands! Do I allow or even push for any type of pain of med????? IDK know what to do, I want to use wisdom as she is so young, but what works for rectal stinging? Is this a flare up that could calm down? Does anyone have this pain all the time?

One other thing I wanted to write about is this toilet seat relief I see so many talk about. Well as she is just a little person she has never said anything about being on the toilet and any relief. I have not discussed with her that it might help as I do not want to tell her anything so that when she tells me a new symptom or a pain complaint then I will know that it is what she is really feeling and what she has heard me talk about. Well my 18 month old is at that age and we bought a potty seat. The kind that goes on top of the regular seat, and of course to be silly my 7 year old sat on it when goign to the bathroom, but the first thing she said when sitting on the little seat was " Mom this makes my itch feel better" I was flabbergasted! So I am goingo buy her one of her own to use as a cushion for sitting.

My prayers are with all of you, my heart goes out to you! This is a terrible affliction! I HATE it!!!!!

[Violet M]

Mom, it's possible she had some skin irritation around the anus just from the loose stools. If the area is actually reddened you could try some OTC hydrocortisone cream. If there is no redness but she continues to complain of stinging (pointing toward a neurological component) there are other topical medications that other PN patients have mentioned that are helpful -- some containing neurontin, etc. Maybe she could try these first before oral medications to avoid some of the systemic side effects.

[nyt]

Mom, Violet's advice of trying some topical cream hydrocortisone first is a good idea esp. this pain might just be from loose stools and not the pudendal nerve. Dr. Howard use to order me a topical Lidocaine cream for the vulva that was made at the pharmacy in Rochester, NY as there were other ingredients in this cream so not to irritate sensitive tissue.

It is amazing that she found the little toilet seat helped her. This is great news. I told our friends one time that when they came for dinner they could all have their own toilet seats for their chair as I didn't want them to feel left out . They all got a great kick out of the idea. You could have a lot of fun with this and make a it a fun thing for her.

You are in my prayers.

[mom]

Violet and Nyt,
Thank you so much for your quick response. I am thankful for community here. I appreciate the helpful insight and advice. She is doing much better today
Mom