The Journey of a child

[mom]

TEST RESULTS all tests came back NEG for tic borne illnesses. Rheumotologist said he saw nothing that would indicate a need for her to continue seeing him. He did refer us to be fitted for shoe inserts as she is very flat footed.
REHAB APPT. 6-14-13
Upon examination the foot Dr. (of all people) does this pressure point test on the bottom of her foot and says" does this hurt any where?" Of course she says yes, and he asks her where...she replies my knees and the back of my knees. His response "thats what I was afraid of" I ask him why??? he says....she is extremely tight. (NO KIDDING!) I pursue with my rant apologizing that it is not directed at him but I have asked for COUNTLESS DR'S to look at her MUSCLES!!!!!!!!!! He was very kind and asked if he could hvae their PT gal come in....she did her examination and said there was DEFINITE cause for concern with how restricted she was.
FRUSTRATION!!!!!! NOt at her of course but WHY DONT DR's LISTEN TO THEIR PATIENTS??????
Any way she wrote a request to our PED for REHAB where she says she will personally do a muscle work up if we get the refferal. She says ther are lots of muscle diseases that most doctors dont think of.(if you recall I have been questioning that the severity of her tightness of leg muscles is what might be compressing her pudendal nerve)

Anyway that is our update and I will post again after we see the PED. PLEASE pray we get the referral. This is a step in the right direction
Mom

[janetm2]

Mom,
Sending all the best vibes your way for ypur daughter. I not only hope the referral comes along but the treatment starts to relieve some pain. A longer fight than should be necessary but it sounds like you found the right people.
Keep us posted.
Janet

[nyt]

Prayers are sent for your hassle free referral and appropriate treatment.

[mom]

just wanted to post, we did not get anywhere with the neurologist...infact she said, "go let your chid live a normal childhood there is nothing wrong with her."
I am so SICK of doctors who REFUSE to acknowledge that just because they dont understand something doesnt mean it isnt an issue!!!!!!
Pressing on....

[nyt]

So sorry that you hit this road block. Will continue to pray for the right doctor(s) to enter your life to help treat your daughter.

[Violet M]

Mom, I'm sorry you got such an unfeeling response from the neurologist but I guess I am not surprised. My neurologist said some pretty incredible things too. What will your next step be? -- or have you decided yet?

Violet

[mom]

We are still pressing ahead. We are thinking of switching dr's
She has had a growth spurt recently which has caused symptoms to be at an all time high.
That convinces me more it muscular for her. She was up and down stairs recently ( we don't have stairs in our home) and she could not walk without dragging her legs for several days.
We find relief still with hot water soaks but that is
About the only thing that helps . Please never cease to pray for us if you believe that way, it is the only thing sustaining us!
Thinking of all you who are on this journey like we are. May you find
answers and peace

Mom

[Violet M]

Mom, I am so sorry your little girl is still struggling. I hope the change in doctors will bring some answers.

My prayers are with you.

Violet

[mom]

NEURO APPT 1-28-2014

We had an appt earlier this week with amazing new neurologist . He is running some tests and I am hopeful that we are moving in the right direction .
I have stated for a long time that the " root" of her PN symptoms is muscular .
We have increased muscular issues in the last year which I will post about later .
Our thoughts and prayers are with all who are suffering especially those who are doing it in silence. I hope they find our site.
Thank you to all of you who have been believing with us for answers. We WILL find them.
mom

[nyt]

You have quite the journey! I'm praying this new neurologist will find the answers you have been seeking.