My 11 year old, Ashleigh, has Spastic Paraparaesis (SP). I found a foundation in honor of the disease she has. I was surprised because this is rare. Not many has heard of this disease. I know we never did. We do not know anyone in our area with SP. I would love to get to one of the foundation's conferences.
SP can be hereditary. Ashleigh is the first one in our family. We don't know what her future will hold. If she will drive a car.
Here is a definition of what HSP is from the foundation's website:
"Hereditary Spastic Paraplegia (HSP) is a group of rare, inherited neurological disorders. Their primary symptoms are progressive spasticity and weakness of the leg and hip muscles. Researchers estimate that some 30 different types of HSP exist; the genetic causes are known for eleven. The HSP incidence rate in the United States is 20,000 people."
"Many different names are used for HSP. The most common are Hereditary Spastic Paraplegia (or Paraparesis), Familial Spastic Paraparesis (or Paraplegia), and Strümpell-Lorrain Disease. Others are Spastic Paraplegia, Hereditary Charcot-Disease, Spastic Spinal Paralysis, Diplegia Spinalis Progressiva, French Settlement Disease, Troyer syndrome, and Silver syndrome."
It took us 6 years for a diagnosis for Ashleigh. Her neurologist would not give up until we knew what the condition Ash has. When Ash was little, I started a website in her honor. It helps me with all of her doctors, etc. I look back to it for information. Like when was the last time she went to her neurologist?
This is Ashleigh in 2004, I think. This picture is a scan from an old camera with film. She has AFOs on her feet. Before going to the taller ones, her braces were only at her ankle because they were working on getting her feet to stop turning in.
Ash also has chronic pain in her legs. She also has pain in her back. Leg pain started when she was 6 years old. Back pain started last August. When Ashleigh's pain is bad, she could scream very loud. We are helping her not to get to that point. She now tells us when she is in pain.
This picture below is of Ashleigh, which was taken on July 8, 2011, when we went to our Zoo. We all went as a family. =) Ashleigh loves to pose for pictures. Ash should have her AFOs on, but she outgrown them. The doctor, who prescribes them, left our Children's so I have to wait for the new one to start in August. She left in June. I need to call them to see if I can get the prescription now. I want to have her in the new ones before school starts.
When we leave the house to go to the zoo or something else that deals with a lot of walking for Ashleigh, I need to make sure I have her medication. She is in PT plus she uses a heating pad. I have a bottle of her meds with a pill cutter in the bag I carry. It is actually a backpack because of everything I need with us. Inhaler, chamber, pull ups, wipes, etc! I have another bottle for her in the cabinet.
Right now Ashleigh's behavior is still bad. We are still finding things that she has stolen. We still have one more step to get her into the wrap around program. We need to do the paperwork for the company that provides the therapists in the home.
Thanks for reading!
Mel
SP can be hereditary. Ashleigh is the first one in our family. We don't know what her future will hold. If she will drive a car.
Here is a definition of what HSP is from the foundation's website:
"Hereditary Spastic Paraplegia (HSP) is a group of rare, inherited neurological disorders. Their primary symptoms are progressive spasticity and weakness of the leg and hip muscles. Researchers estimate that some 30 different types of HSP exist; the genetic causes are known for eleven. The HSP incidence rate in the United States is 20,000 people."
"Many different names are used for HSP. The most common are Hereditary Spastic Paraplegia (or Paraparesis), Familial Spastic Paraparesis (or Paraplegia), and Strümpell-Lorrain Disease. Others are Spastic Paraplegia, Hereditary Charcot-Disease, Spastic Spinal Paralysis, Diplegia Spinalis Progressiva, French Settlement Disease, Troyer syndrome, and Silver syndrome."
What is (Apparently Sporadic) Spastic Paraplegia?
"Many individuals with all the signs and symptoms of HSP do not appear to have similarly affected family members. Without proof of a hereditary link, some neurologists call the condition Spastic Paraplegia or Apparently Sporadic Spastic Paraplegia."
What are the symptoms?
"The hallmark of HSP is progressive difficulty walking due to increasingly weak and stiff (spastic) muscles. Symptoms appear in most people between the second and fourth decade of life, but they can start at any age.
Initial symptoms are typically difficulty with balance, stubbing the toe or stumbling. Changes begin so gradually that other people often notice the change first. As the disease progresses, canes, walkers and eventually wheelchairs may become needed, although some people never require assistive devices.
Other common symptoms of HSP are urinary urgency and frequency, hyperactive reflexes, difficulty with balance, clonus, Babinski's sign, diminished vibration sense in the feet, muscle spasms, and congenital foot problems such as pes cavus (high arched foot). Some people may experience problems with their arms or fine motor control of their fingers but for most people, this is not significant."
This chart explains HSP very well. It took us 6 years for a diagnosis for Ashleigh. Her neurologist would not give up until we knew what the condition Ash has. When Ash was little, I started a website in her honor. It helps me with all of her doctors, etc. I look back to it for information. Like when was the last time she went to her neurologist?
This is Ashleigh in 2004, I think. This picture is a scan from an old camera with film. She has AFOs on her feet. Before going to the taller ones, her braces were only at her ankle because they were working on getting her feet to stop turning in.
Ash also has chronic pain in her legs. She also has pain in her back. Leg pain started when she was 6 years old. Back pain started last August. When Ashleigh's pain is bad, she could scream very loud. We are helping her not to get to that point. She now tells us when she is in pain.
This picture below is of Ashleigh, which was taken on July 8, 2011, when we went to our Zoo. We all went as a family. =) Ashleigh loves to pose for pictures. Ash should have her AFOs on, but she outgrown them. The doctor, who prescribes them, left our Children's so I have to wait for the new one to start in August. She left in June. I need to call them to see if I can get the prescription now. I want to have her in the new ones before school starts.
When we leave the house to go to the zoo or something else that deals with a lot of walking for Ashleigh, I need to make sure I have her medication. She is in PT plus she uses a heating pad. I have a bottle of her meds with a pill cutter in the bag I carry. It is actually a backpack because of everything I need with us. Inhaler, chamber, pull ups, wipes, etc! I have another bottle for her in the cabinet.
Right now Ashleigh's behavior is still bad. We are still finding things that she has stolen. We still have one more step to get her into the wrap around program. We need to do the paperwork for the company that provides the therapists in the home.
3 therapists that will be in our home:
*BSC= Behavioral Specialist Consultant (3 hour), writes treatment plan, works with us, not Ash. Can visit her school.
*MT= Mobile Therapist (2 hours), counsels Ash & us.
*TSS= Therapeutic Staff Support (10 hours), works one on one with Ash.
*MT & TSS works in home, & the community.
I am not sure how we will do this again. We did it before & I know we can do it this time, too. It is for Ashleigh & she needs this.
If you want to read the first time we went through this, click here (scroll down to November 2008. It is just a paragraph) & here.
Thanks for reading!
Mel
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