Sunday, May 9, 2010

Where to begin?

I just realized that it has been almost 4 months since I wrote here. I apologize. There are plenty of excuses, and a few reasons. I think the main one would be discouragement.

Actually, discouraged does not begin to describe where we are with Frances' treatment for the numbness in her arms and hands. Since I last updated everyone, she saw a neurologist. I won't tell you what I think of him. I will just say that, because all of the tests came back negative, the conclusion was that the cause of her numbness is psychosomatic, i.e., it's all in her head. That was in January. We followed up with the primary practice, who then told us there was nothing else they could do, and to come back if there were a change.

Since then, the numbness has progressed a bit further up her arms, and she is having trouble, sporadically, with holding a pencil to write at school. There is no difficulty with strength...the main issue seems to be that she cannot feel that she is holding the pencil, and cannot make it cooperate to write on paper. Very clear, huh? She is getting more frustrated. I am getting more frustrated.

I requested the school provide a second set of books, so she wouldn't have to haul 30 pounds of books back and forth to school every day. They required a doctor's note to do that....so we went BACK to the primary practice. This time, I INSISTED on 3 things when we went in there. First, the note....got it. Second, physical therapy to deal with the pain in her back, and third, a referral for a second opinion with a neurologist at the local children's hospital. I got all three things I requested.

Frances has started physical therapy, and the therapist doing a lot of testing on Frances, trying to figure out the numbness thing, too. She (the PT) started off saying that the way Frances was describing things was fairly classic for psychosomatic symptoms...but has since revised herself, to say that she does not believe that Frances is making things up...she really can NOT feel anything in her hands and arms. AT ALL.

Meanwhile, the referral for the second opinion popped us right back over the the same place we went before...perhaps to a different neurologist, but I did not trust that to be an unbiased opinion, and called requesting, yet again, that we be sent to the Children's Hospital of the King's Daughters. This time, I really got what I wanted...and have an appointment for her to go in later this month.

Finally, I feel like I caved under pressure...I have made Frances an appointment to be evaluated on the off chance that this is psychosomatic. I know it can't hurt her to talk to someone...especially since we have a great Christian counseling group here. I just do not believe that is the source of the problem. That is scheduled for 3 days after the appointment with the neurologist.

Meanwhile....

Life goes on. There are 5 other kids in this family, as well as me and my husband. All six kids are in school. There is homework every day. Jason and I are leading small groups (Jason has 2!), and are deeply involved at church, and in ministry to hurting people around us. Softball and baseball seasons have started. The school year is winding down. I am still working from home. Jason is still working on his second Masters...3 classes left! I am gearing up to start on my Masters. We are attempting to buy a house. I have been in physical therapy since sometime in February.

Some days I want to scream "STOP THIS RIDE....I WANT OFF!" But things seem to keep moving faster and faster, and I have no control.

I don't like change. I don't like the hectic pace we are living at. I am scared to death that my daughter has something that is really scary to think about. I am scared that because we're not finding answers, we are waiting too long, and there will be no reversing the damage already done. I'm sure I am NOT ready for what the next 6 to 9 months hold...but there is not holding back time.

I keep reminding myself that God is in control of this ride. I know that He knows what my future holds, and that He has good and not harm planned for me, and for my husband and children. I get that. But in the trenches where I am hunkered up right now, I have to be reminded of that very often, because the immediacy of issues keep distracting me from the bigger picture that God loves me and my family, and wants what is best for me.

So, please keep praying. Thank you for your prayers so far. I am clinging to those, desperately.

6 comments:

Cate said...

((hugs)). Hopefully the next doc will have half a brain and get to the bottom of the problem!

Marcie said...

Hi. Didn't know this existed! And truly, I admire you for even dooing it, with all the rest of things that fill your life...not just to "full" but indeed, to running over. But running over means abundance...which is what God has promised, over and over...abundance. Sometimes it seems the abundance is in negative or unpleasant things....but during the times I retain my sanity, I realize that even in the difficulties, there is abundance...abundance of those things we both crave and need the most...His presence,His love,His direction, His wisdom,His supply, His patience, His perseverance, His joy, and joy in Him.Keep putting that one foot in front of the other..we both know, when you can't "hang in there" any longer, it is He who will hold on to you! Love you, love that family. Prayers.

Stacey,momof 2 said...

hop over to http://www.therextras.com/therextras/
and send Barbara a message or leave her a comment she is a great voice of reason for PT and OT stuff.. she lives in TX but she is very knowledgable about the system and about how to help kids~ get what they need. She might have some suggestions for you-- she is a mom of teens, a Christian and funny!
Prayers for all of you!

KC said...

Oh Laura ((((HUGS))).. I know 1st hand how hard it is to watch your child in pain and there be nothing you can do to help her.. I'm so sorry you are having to go though this. My 8 year old known as Sweet Pea on my blogs.. was having issues that her doctor kept insisting was pyschological.. wanted her to see a child pyschologist.. told me the pain she was feeling just about every day was all in her head.. I never really bought into that, sort of like you are saying.. I went ahead and got the ball rolling to see the counselor figuring like you it couldn't hurt and maybe it would help.. but before her 1st appointment.. Sweet Pea got sick and her issues got sooooooooooo much worse and when they got worse I was thinking she needed a pyschologist.. but though that God opened the eyes of her doctor and they found out she has a rear disorder called PANDAS.. It' not the same as what your daughter is going though.. but while I was looking for answers to what was going on with my little girl.. I meet a lady who told me to look up RSD... Listing to your story here the RSD stuff popped into my mind. The lady who told me to look into it for my sweet pea, has RSD and she said hers started with numbness(though hers was in her legs)she went years going back and forth to doctors who all told her it was all in her head and nothing was rong.. until her RSD got so bad and it was like her 5 neurologist who figured out she had RSD. I don't know if that is something you have ever looked into.. but I wanted to pass this onto you since it popped into my head while I read your post..

You are so right..God is in Control and sometimes he just lets these things come into our life not to show how strong we are but to show us how weak we are .. BUT how STRONG HE is.. and teach us to fully depend on him.. Seeing your child like this is a very scary thing.. but God will work this out to bring Glory and hounor to Him.. This is what I keep reminding myself while we are dealing with Sweet Pea and the PANDAS(which is basicly antibodies attacking her brain, scary stuff)
I will continue to pray for you, your dd, your family and God to bring the right doctors your way who will listen and be willing to help..
(((HUGS)))

Anonymous said...

found this:

When any neurological issue cannot be found, at least check out for vitamin deficiency.
I know sounds simple...but can be deadly whenever deficient. B12 deficiency can cause Neuro problems...as did in my case.
I was seen by numerous doctors...not single one of them found this.
Just like the story here, ...she too had a B12 def, my story was exactly her's.
Google search "Rosannster"...to learn about B12 deficinecy and how to test for this properly.
Lots of doctors don't know about this.
I'm so glad I found some answeres...and after supplimenting...my Nerve conduction and EMG muscle testings are now back to normal, all with B12 vitmins!
I found Rose on Brain Talk community Forum.
I nearly died from the B12 deficiency...she helped me with this as well as many others who're suffering.
It could be this in your FIL case...my doctors did NOT agree with this at first...but now they've seen a complete turn around in my health, and the EMG and NC test can never be wrong!
My doctors all got an education with my case.
B12 may be in your blood, but not in the tissues!...but you've got to read this on Roseannsters web page as well as Brain and Neuro Talk forums.
The doctors there know how people are suffering and being misdiagnosed and missed with such a simple vitamin.
Blessings, CryTears
PS:
As with your FIL case...
I too had numbness in my Peripheral Nerves...
Numbness and burning from elbos to finger tips and mid thighs to toes.
was diagnosed with Peripheral Neuropathy.
I refused to just take the medications meant only to mask the symptoms...I wanted to know what caused this...was a B12 deficiency DESPITE being told my B12 level was in normal range!
It can't hurt you...can take a boat load as it doesn't store in the liver as some vits do.

Penny said...

I do energy medicine/chakra work....when did this start with Frances? what was going on in her life then? and what other health issues are going on? - no matter how simple you may think they are.....
jinxlynx65@yahoo.com