The Journey of a child

[HerMajesty]

That is very insightful nyt, having been a teen with interstitial cystitis I have to agree. I did everything, not necessarily because I wanted to at first, but because at first I had to because nobody believed me anyway. I didn't even get a PE excuse until almost 2 years after onset when the Doc diagnosed me with a cysto / hydro. Before that he thought I was faking so no excuse note. What it means to me now is that I have memories of many "normal teen" experiences, whereas if I had spent my teen years lying down at home as I yearned to do because of the pain, I would have memories of every crack in my bedroom ceiling.
As all of us who have given birth know, you can't REALLY remember pain: Intellectually, you can remember that you were in pain but you don't actually relive it. So all the stuff I did while I was in pain, I only remember the stuff and not the pain. Learning to be out there acting like a normal teen even while in pain was particularly important to the course of my life because I met my husband in high school.
As someone who now has neuropathic itch like your daughter, I do think it is even harder to deal with in social situations than pain. I have been forcing myself to stay involved in life and not be a hermit, just like I did when I was in pain, but it definitely is not easy. I promise you Mom through this adversity your daughter will grow into a young lady of character! You don't have to take my word for it since James 1, amongst other scriptures, promises the same.
The bike: DEFINITELY NOT. A razor scooter would be a great way for her to keep up with her friends when they are biking. Other activities: like I said I agree with nyt, let her try them on a limited basis if she has enthusiasm for them, and see how she tolerates it. Biking is the only thing that directly damages the pudendal nerve; other activities, just my opinion even if they give her a minor flare, are worth it as long as she is self motivated and they are worth it to HER.

[mom]

WOW!
Thanks ladies for the words of wisdom, hope , and encouragement!
The school "drama" is really not anything out of the norm for school kids. Just learning to respond appropriately and when to walk away. When to speak up and when to let it roll off your sleeve. That is alot for an 8 year old

She has had some counseling, and it is SO good to talk with someone outside of MOM or DAD

Great idea of small intervals of sports. She has actually taken an interest in tennis, so we have been working on that a bit, just got her her own raqeut.......and she really likes it.

I would have to say the hard part is as you both alluded too is how much is protecting her and much that I think I am protecting her from is hurting her (or mentally hadicapping her?)
I know I need to find the balance. More than anything I want her mind to be stable and her to be confident. I may be robbing her of that by keeping her under my "wing" so to speak.
Thank you for your words REALLY! HerMajesty, that scripture although I have heard and read it before was very timely! Thanks for being a vesel........

Mom

[mom]

Just dropping by,
We are still experiencing minor symptoms..... Still trusting and believing in someone BIGGER than us.
Not prepared to try anything at this point still.......

[nyt]

Thanks for checking in to let us know how you all are doing. Prayers are sent to you, your little girl and family.

[Violet M]

Hi Mom,

Glad to hear the symptoms are still minor. Sounds like you are making the right decisions.

Hugs and prayers,

Violet

[mom]

NEURO APPT. 1-30-2012

Had another Neuro appt at childrens, unfortunatley we had the same woman we had over a year ago. However although she still acted like I was imagining what my child was going through, she sarcastically said she would be happy to have their PT's look at her for a second opinion ( like Loretta's opinion was invalid) We went down to the PT and she mesured her range of motion at the bend, AND WOW amazingly she cam to the same conclusion as the last two PT's we have seen did..SHE IS RESTRICTED!!!!!! She can hardly bend to touch her shins before it hurts in shins, hamstrings and ankles. She had trouble doing most of the stretches she tried...BUT this PT was WONDERFUL....( I can;t wait until the Neuro gets her report ) Anyway, we are trying to get referal to the spacisity clinic for a botox and oral baclefen consult. But in the mean time she has been approved for a water stretch class in a heated pool 92 degrees (i think) one day a week for 4 months..so we'll see. I am hopeful that every avenue we explore will lead us to another right door.
Also re visiting her over all growth....she is 8 now and is very small...her weight at Dr. was 42# and she still wears about a 6x
STILL BELIEVING FOR OUR MIRACLE wether through Dr's or divine intervention........

MOM

[Violet M]

Mom, I'm so glad to hear that you've found a wonderful PT! Hopefully the water therapy, etc. will be beneficial and she will be able to get back some better range of motion. I'm sure it's hard but it sounds like you are doing a great job being your child's advocate.

Best,

Violet

[Anne smith]

Hi mum
I'm new to this site and as I have time on my hands(getting over a bunion op) I have been browsing threw the forums and found your post and straight away on hearing your daughters symptoms and the diagnosis of lychens planus I remember a girl at works mother having months of tests and wrong diagnoses until the settled on that. At the time none of us had realised you could get it there. Now what I did find intereasting was that all they did was put her on amitriptalene witch I did find odd! (considering that I have been on years for my p.n.e) but the intereasting thing is she is much improved while she is on it, then gets the symptoms back when she is not! I hope that this is of intereast to you!
Anne smith

[mom]

Hey Anne,
I hope I did not misprint...but the Lychen Sclerosis was what I thought she may have had. The dermatologist confirmed is was not that. The cream he had her on improved the red irritation from all the itching but never decreased the itch. Symptoms now are still itch with occassional leg aches, but mostly itch around the vulvar/clitoral area.

Mom

[nyt]

Mom, so glad to hear the update and that you have a found a PT that you like. That makes such a huge difference! I hope the water therapy works for her. I found that is the easiest kind of exercise for me and do much better with it than anything else. Last time I went to Phoenix to see Dr. Hibner I sat next to a PT who specialized in water therapy for children. She said the field is expanding by leaps and bounds and she is very happy with the improvements she sees in her patients who have tight muscles no matter the cause. I pray that this will be the same for your daughter.

RE: short stature. Are they sending you to endocrinology?

You and your family are always in my prayers.