Thank You

I want to thank all that send me emails and comments.  I am very slow sometimes to respond and I want you to know that I do appreciate all your support and advice.  I am often overwhelmed in my day to day life, hence the very infrequent posts, and am happy when I get at least half of what I had planned done each day.  Know that we receive your messages and greatly appreciate them.

My Second Daughter

My second child and second daughter, almost eight now, has been complaining often that her "pressure points" keep getting hit.  It is always in her arms or hands and it causes her pain.  It is from simple things like her shoulder hitting the side of a doorway as she walks through or hitting her hand on a counter top or table.  This only started in the last few months and sometimes she has one of her arms lying limp beside her.  She can move it but it causes pain and takes more than normal effort.  I have her squeeze my fingers with each hand so I can try to judge a difference in her grip which has been significant at times.  It is always gone within a day or two and if I were not watching for the signs of HNPP, I may not have paid much attention.  We set up an appointment with the pediatric neurologist that her sister goes to.  I am hoping she will be able to tell us if there has been any noticeable nerve damage or muscle weakening or if I am making a big deal out of nothing.  I don't want to let it go if it is important so, we will see.

As a side note:  Her cousin was just diagnosed with HNPP as well.  He is the oldest in his family and actually got his first injury when my first daughter got hers.  His was a weakness in his hand that affected his performance with throwing the football.  They didn't know what had caused it but thought it may be related to his sport activity.  They called us to get details on my daughter's hand issues wondering if it could be the same thing.  This was about a year before we got her diagnosis.  It is funny because we determined it wasn't related based on the fact that the problems were not quite the same.  I didn't understand the disease at all.  Now it seems so obvious to me.  It just goes to show how misunderstood this disease can be and how easily it can be missed.  His doctor then wanted to do surgery as did ours but we both decided against it and his partial paralysis and numbness healed.  It wasn't until his second injury (weight lifting class) that they were finally diagnosed.  He is now seeing our same neurologist.  It has been interesting seeing my sister-in-law's perspective change as she has started studying the disease now too.  
Even those with it can't fully understand what another sufferer is going through if their symptoms are different and especially if theirs are less severe.  Compassion is so important.