miércoles, 6 de febrero de 2013

Daughter Has HSP - Hereditary Spastic Paraplegia community - RareConnect

Daughter Has HSP - Hereditary Spastic Paraplegia community - RareConnect

Daughter Has HSP

My story about a grandmother, mother, brother, and child with HSP
Written by CandCsMom, published 15 days ago.
Daughter Has HSP My daughter who just turned four on January 1st was diagnosed with HSP back in January 2012. Just a little after her third birthday. From the time she was able to pull herself up to stand as an infant, she was up on her toes. I think she'd make ballerinas jealous. She was a very late walker. She would walk holding onto things a little while after she figured out how to pull herself up, but she didn't let go of things and walk until she was 18 months old.
I was hoping that her walking on her toes would be something she'd simply grow out of. My father told me that I too walked on my toes as a child and grew out of it. I took my child to several doctors. All of them told me she was okay and she would grow out of it. It took the recommendation of one doctor to get her seen by a muscle specialist at the Children's Hospital here in Colorado at the North Campus. From there they referred me to the Muscle Clinic at the Children's Hospital main Campus in Colorado. That was where she was diagnosed.
At the age of four, my daughter is still a toe walker. She stands on her toes, even when she's not walking, but she can stand flat footed. It just takes some work to do it and is not too comfortable for her. That is her normal. It's normal for me to stand flat footed, while it's normal for her to be up on her toes. She freaks out and cries when people other than myself mess with her feet. She cries when I cut her toe nails. When first diagnosed she went to physical therapy once a week and was taking Baclofen. She currently goes to physical therapy twice a month through February this year. Starting in March she will be going only once a month. She currently wears braces which helps her walk heel to toe. When not in her braces she is up on her toes, stumbles, and drags her feet. If you let her go outside in just her socks and she runs on the sidewalk, within a few minutes there will be holes on the top of her socks.
Everything with my daughter is nothing new to me. Well the braces and Baclofen are. My grandmother and mother had HSP. I say had because they are no longer with us. From as far back as I can remember as a child my mother would always walk on her toes. I thought it was because she had a job that required dress shoes and she wore high heels, so I thought maybe she was just used to walking in her heels even when she wasn't in them. My mother didn't really show any other signs of HSP until a little after turning 50. Before she passed away, she was walking with a cane and sometimes a walker. More so a walker right before she passed. She herself had been diagnosed back in 2011. She did not die because of HSP. She passed away because of a blood clot.
My brother is thirty four and also has HSP. As far back as I could remember as a child, my brother has always stood with his knees bent, dragged his feet while walking, walked on his tip toes. Unlike my daughter who stands on her toes while standing, my brother stands flat footed with his knees bent. My mother stood flat footed as well. My brother as a child was diagnosed with cerebal palsy. This was back in the late 70's early 80's where people were pretty unaware of HSP. My brother still hasn't officially diagnosed with HSP himself, but after my mothers diagnosis, her doctor told her that it was more than likely what her son, my brother had as well. He currently doesn't have any insurance and the state he lives in doesn't consider him to be disabled. As he is getting older his condition is getting worse. He walks more pigeon toed, has more pain in his feet and back, especially after standing or sitting for long periods of time.
So there are four generations of HSP that I know of in my family. My grandmother (my moms mother), my mother, my brother, and my daughter. When my daughter was first diagnosed I kicked myself for giving this to her. I know she didn't ask for it, and neither did any of my other family members. I just know first hand how hard it is for kids with disabilities in school. My brother and I are only three years apart, so throughout our school years, we were mainly in the same schools. It broke my heart seeing the way people treated my brother and they way they talked about him. My heart is going to break even more when it comes to my daughter. My brother is one thing to feel sad about, but when it comes to your own child, it's on a completely different level.
There is no way for me to know if later on in my life symptoms of HSP will show up or not. My mother's symptoms really didn't show up until a year or so after she turned 50. My mother and I are so much alike when it comes to kids. We both had two kids, one that has HSP and one that for the time being is showing no signs of HSP. Both of our kids that have HSP were first born. My brother is first born and my daughter is first born. We each had one boy and one girl. She had a boy and then girl and I had a girl and then boy. My mother had my brother at 27 and had me at 30. I had my daughter at 27 and my son at 29, four months shy of turning 30.
Not sure if this is going to help anyone, but that's my story about HSP. I don't mention really anything about my grandmother because I honestly didn't know she had HSP or any signs of HSP until after my mother passed away in 2009. My father said something about it after my daughter was diagnosed.
Written by CandCsMom, published 15 days ago

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