My Daughter's Story

My daughter Brista was diagnosed with HSP.

Written by batson_jessica, published 10 months ago.

My Daughter's Story

My daughter Brista was always a toe walker from the age of 9 months when she started walking. She walked, ran and did gymnastics on her toes. When she was 5 years old I took her to our regular Doctor. He said that she chose to walk that way. So I didn't think anything about it. When she went to kindergarten her teacher worried about her walking that way. There was a little boy in class that had cerebral palsy. He had a physical therapist come to the school to stretch him out.

One day her teacher sent her down with him and asked the therapist if she could look at her too. The therapist looked her over and said she chooses to walk like that. So I had two health care professionals tell me that. She had been very clumsy all her life. Fast forward to 2010. She is getting ready to go into the 8th grade. That summer my parents took her to a Shriner's Clinic to get looked over and see if they could help her. The Shriner doctor said there was definitely something wrong with her and if she was going to grow out of this she should have done it by the age of 5.

We started going to St. Louis at least once a month to find out what was wrong with her. At first they seem to think she had cerebral palsy. They had us do stretches then they put a cast on her feet. Low and behold, she still walked up on her toes even though they were in a cast at 90 degrees. They had said that she was the highest they have ever seen anyone walk on her toes and that she has over active reflexes.

The had a MRI done and saw a neurologist from the children's hospital. He was the one who diagnosed her with Familial Spastic Paraparesis. He told me not to look a blogs because it will just upset me more if I did. And that was pretty much all he said. So in the mean time she had her heel cords cut and lengthened.

She is now 16 years old. and She has complained that her legs go to sleep while she walks. That her legs feel like they are going out on her when she goes up and down stairs. And the other day she said that her hips hurt and that she felt like an old lady.

Written by batson_jessica, published 10 months ago.

20 comments for «My Daughter's Story»

Expand all ]

  • franc1s | published over 4 years ago | Originally written in English

    Dear Jessica,
    I am so sorry to read about the struggles with your daughter, Brista. I had a very similar experience with my daughter, Heather. She walked on her toes as a toddler. I would have similarly just chalked it up to her being just individual or different but my wife was from a medical family and so took her to a child neurologist in a larger city. This doctor, of course, mis-diagnosed her as having spastic diplegia and said the cause was a lack of oxygen during birth. Heather had been born in just minutes but the doctor had used some sort of suction cup that I somehow explained to myself as the culprit. The doctor gave us a very dire prediction of Heather's future, that she would be continually getting worse, would never really be able to participate in sports or even date anyone "normal". Well, we had her heel cords lengthened while she was still in kindergarden. Then, when I was in my 40s various people said I was walking differently. I can remember having a harder and harder time jogging around the neighborhood without stumbling and really getting road rash. Finally, my doctor started sending me to doctor after doctor, each with a different diagnosis that I was not satisfied with. I finally searched on the WWW (before google) with the words hereditary and spastic and HSP came up. I thought this was too convenient but kept it in the back of my mind. I finally asked my doctor to send me to the best neurologist in Texas, the state where I live. It was in Houston that doctor Appel diagnosed me with HSP, without me telling him my suspicion. This was in the late 1990s. Since that time my condition has of course progressed to where I now get around with a rollator and a wheelchair. Heather is an RN and only has a slight limp.

    The good news for Brista is that childhood onset is very usually very slowly progressive and she will probably never need a wheelchair. The other good news is that the research that The Spastic Paraplegia Foundation is sponsoring is showing some very positive light at the end of the tunnel. I know this because I am the President of the SPF and though we have to keep everything confidential, let me tell you that real progress is taking place every year. Hope is so real I can taste it but all else I have to keep under my hat for another year (to keep their research confidential). Please see our website at http://sp-foundation.org.

    Anyway, thanks for your communication. If you ever have any other questions, please do not hesitate to ask.

  • formerEURORDISstaff | published over 4 years ago | Originally written in English

    Hi Jessica,
    Rob from EURORDIS here. I sent you an email about fixing the photo, I hope you received it. I can just echo what Frank says in terms of following the research progress via the SP Foundation:
    http://sp-foundation.org/

    You can get in touch with their Missouri ambassador here:
    http://sp-foundation.org/get-assistance/st...

    Is your daughter in touch with other people her age living with HSP? Do you think she would be interested in talking to someone else?

    Frank, does the SP Foundation have any kind of "youth group" for younger people with HSP to talk? Not calling you old or anything, but I'm sure maybe some young people could benefit from talking to one another as they go through already difficult teenage years?

    Rob

  • batson_jessica | published over 4 years ago | Originally written in English

    Thank you Frank for the words of incouragement. I am very happy to hear that there are new research happening. The thing that has me baffled is I do not know anyone in my family that has HSP. My mom side of the family has all pasted away except her brothers. I remember when i was younger going with my grandmother to see her brother. He was in a wheelchair but i don't know if it was because he was elderly, if he was hurt or had something wrong with him. On my dad's side i do not have anyone either. My grandmother on his side said she does not recall anyone with any gait problems or leg problems. And as for Brista's father he is not in her life. I do not know any back ground at all. I tried asking and he said he didn't know of any. so I am stumped.

    I try and tell her how important it is for her to do stretches but she is a teenager and i am just mom what do i know.

    Thank you Rob for letting me know the picture was messed up.

    I don't know if she would be willing to talk with other kids about what is going on with her. But it wouldn't hurt to try. We are from Illinois.

  • emarin77 | published over 4 years ago | Originally written in English

    Hi Brita. I started having symptoms of Spastic Paraplegia when I was 15. First my ankles were not working correctly in dance class at camp. Then at 16 while working at McDonalds I tripped over myself and walking slower. At high school I was fine with walking/running. It wasn't until college I started having a lag in my leg and eventually had to start using crutches with wearing ankle foot orthotics (AFOs).

    There is no one in my family that has HSP either. In rare situations in can happen though or they just have not found the gene that causes our mutation.

  • franc1s | published over 4 years ago | Originally written in English

    I am pleased to have so many people participating in this conversation.

    Jessica, I am the first person in my family with HSP as well. I would think that scientists would want to test my parents blood to see how they could combine to create me with HSP but no one has been interested. My dad is 90 years old so they don't have forever to make up their mind. A scientist in France once told me that it is usually males that contribute altered DNA and this is largely how evolution takes place. My father did not like hearing that.

    emarin, I had some symptoms as a teenager but I always just thought of it as being uncoordinated. I could never skateboard or surf very well even though I tried pretty hard.

    Rob, I have been asking around to see if we could create a teenage talk group. That is a great idea. Thanks.

  • kathleenmccarrick | published over 4 years ago | Originally written in English

    Hello i am a 20 year old girl who has hsp and i am happy to help anyway i can

  • batson_jessica | published over 4 years ago | Originally written in English

    Thank you all for commenting. I was wondering if any of you have had your legs go to sleep while you were walking? She told me that sometimes that her legs just fall asleep while she is walking. I didn't know if this was from the surgery or a symthom. I would have thought that if it was from her heel cord surgery then it would have been happening since the surgery but it just started within this past year.

  • franc1s | published over 4 years ago | Originally written in English

    Kathleen,
    Well, we were talking about a teen to early 20s Facebook page. They say that anyone can create a Facebook page and membership can be limited. Apparently, teenagers would not want their parents tuning in to read all their private conversations with other teenagers so membership needs to be protected. Would you like to start such a Facebook page? If you did, we could set up a connection on the Spastic Paraplegia Foundation website and announce it there as well. You would be sure to have some visitors and the conversation could be a real godsend to many confused and I bet lonely people. If you need any help setting it up, I know of people that could contact you with help. If you'd like to send a private message, my email address is Frank.Davis@sp-foundation.org
    Thanks,
    Frank

  • franc1s | published over 4 years ago | Originally written in English

    Jessica, Here is something I just found on Google:
    Technically known as “paresthesia”, this syndrome is caused by the compression of specific nerves. When you sit cross-legged, sleep with your arm above your head, or position any limb in such a way to put excess pressure on a nerve, that nerve will stop sending impulses normally. Should the pressure be great, or the duration be long, the nerve will eventually stop sending impulses altogether. Any area the nerve services will essentially then “fall asleep”. Think of a person standing on a garden hose. It’s hard for the water to get to the nozzle when the person’s feet get in the way. If the person’s heavy enough, or she stands on the hose for too long and the hose fully compresses, water will eventually stop flowing entirely. Once this pressure is relieved, your nerve will start to function normally again (hopefully) and you can now move your hand/legs/arms/feet. Nerves, like a well worn hose, may take some time to work properly (expand) and you may feel some tingling, “pins and needles”, during the process.
    Nerve cells, for the most part, have their main bodies located in the spinal cord itself. They have what are known as “axons” that branch out to your limbs (and other parts of the body, but we will focus on the limbs) and carry nerve impulses out from the spinal cord. Together with another cellular protrusion known as a dendrite, these projections allow us to feel the world around us.
    Nerve impulses require a healthy energy supply, known as the axonal transport system. This well developed micro-vascular distribution method provides the blood flow needed to maintain the cells in good working order. If pressure is put on the correct spot, though, all the tiny arteries, veins and capillaries that supply the nerves’ nutrients become pinched off and the nerve cells begin to function abnormally. If you doubt me, hit the Ulnar nerve (the funny bone) on something and see how sudden, extreme pressure makes you scream!
    Studies have shown that it doesn’t take much to cause the axonal transport system go haywire. External pressures of as little as 20 mmHg (about ½ pound per square inch) caused intermittent paresthesia due to the veins supplying the nerve having their blood flow reduced. When you get to around 1 pound per square inch for around 2 minutes, this can cause numbness, impaired dexterity, and result in muscle weakness.
    Compression isn’t the only thing that can cause limbs to fall asleep. Excessive vibration will also lead to paresthesia. Operating hand-held vibrating tools is an extremely common cause of this. For example, dirt bike racers who need to grip handlebars tightly, while jumping frequently, experience this and commonly refer to these symptoms as “arm pump”. The process that causes these symptoms in the presence of vibration hasn’t yet been fully clarified, but these pulsations have been shown to injure the entire neuron.
    Any discussion of what causes limbs to fall asleep would be remiss without talking about the common misconception that a limb falling asleep is caused by a lack of blood flow to the entire limb involved. While blood flow is blocked to the nerve specifically, if the entire limb were to be cut off from blood, severe life threatening problems would arise every time we sat “crisscross applesauce” in grade-school.
    In medical terms, this is referred to as compartment syndrome.

    I have never had my legs fall asleep while I walked but it sounds like this could easily happen.
    Frank

  • emarin77 | published over 4 years ago | Originally written in English

    Jessica:

    My legs have never "gone to sleep" while walking. Most of my stiffness while walking is in my lower half of my legs (calves, feet & ankles). Wearing an AFO really helps with lifting my foot and ankle. I walk with a walker now.

    My hands are usually the colprit of "going to sleep" because they lay in a weird position.

  • jonhaacke | published over 4 years ago | Originally written in English

    Hi, my family doesnt have any history of having FSP in the family. I'm the first one to have it. My parents said i was very clumsy when I was a toddler and falling over a lot. They thought it was just part of my normal childhood but when I was 13 years old, i started to complain to my mother that my toes and ankles are hurting. I'm dyslexic as well and having mild ataxia. I have difficulty swallowing my food and speech problems so I go to speech therapist as well. We went to neurologist only when I was 18 and diagnosed having FSP. I still go to the hospital every year in London but there's still no cure. I still go to the chiropractor to lessen my pain in my back and neck. My neck is shaking a lot when i bend down or writing. But i can say that the chiropractor is really helping me a lot. I have also a therapist teaching me some exercises and stretching. I'm 30 years old now and married and I can still walk without using anything though my balance is really bad.Sometimes my legs are hurting too and tremor at night. I stop using medications cos it seems it really didn't help my condition especially when I'm in pain or when my legs and neck moves. My neurologist said that I might not end up using a wheelchair cos I had fsp since I was a child so the progression is very slow. My only worry now are my children. My daughter is 3 years old ad my son is 1 year old. So far I'm not seeing any signs that they have my disability. hopefully in the future, they will find a cure. I'm praying everyday that someday they will really find a cure. God bless us.

  • kathygerlynnmorrison | published over 4 years ago | Originally written in English

    Jessica,my name is Kathy I have a long story to but to let ya know a little.i have been heathy all my life up until 2010 family was on me about my walking,never noticed this until 2012 I had accident by tripping over phone line in store,had to have acl surgery and once the knee healed I finally realized I have a problem with my walking.i went to ymca for nine months taking exercise class in water thinking my walking would change but in nine months it didn't but I lost 83 pounds and for me I did this all on my own,i feel 100 percent better except I walk with a cane and I am only 44 so one thing I will never do is give up no matter what cause all of us that have hsp are sp lucky cause it could be worse.kathy

  • kathygerlynnmorrison | published over 4 years ago | Originally written in English

    my last name is Morrison if ya want to look me up on facebook.thanks kathy

  • Tara | published about 1 year ago | Originally written in English

    Hello.... I am new to this site and would like to send you a private message but have no idea how. Can anyone give me directions. Thanks

  • martacampabadal | published about 1 year ago | Originally written in English

    Hi Tara,

    To send private messages just go to the member's profile (click on the username). Add this person as a friend and once he/she has accepted the friendship you can send private messages through the contact button.

  • Tara | published about 1 year ago | Originally written in English

    Thanks Marta!

  • TinaGMc | published 11 months ago | Originally written in English

    Jessica:

    My son Sam was diagnosed at 19 with HSP SPG 11, a recessive form of the condition. No one on either side of the family has ever been diagnosed and Sam's symptoms came on suddenly. We got the same feedback about toe walking when he was little but he took Taekwondo and continued until after his diagnosis when his symptoms prevented him from participating.

    Sam talks about his legs and feet falling asleep and he gets spasms in both. He is currently taking Baclofen and he sees a massage therapist and yoga teacher twice a week. We also purchased a theracycle which assists with movement using a built in motor. In the past five years one problem has been lack of aerobic exercise because walking is very difficult.

    I think the massage and yoga help with the muscle spasms. I know Sam is feeling frustrated because he can see how much ability he has lost in the short time since his diagnosis. We are considering getting him a wheelchair to increase his mobility because walking with forearm crutches makes him very tired.

    What our neurologist keeps telling us is that everyone is unique and that they don't know how quickly or slowly Sam's condition will progress only that it is the complex form of HSP.

    I think a facebook page for young people diagnosed before they were 22 would be amazing. Sam has no one else he can talk with that is his age. It is quite something else to go for most of your life assuming that your ability to walk is part of the package and then out of the blue finding out that there is a time limit. That's what it was like for Sam.

  • hilaryruth | published 7 months ago | Originally written in English

    My son is 24 and was diagnosed with SPG11 a few years ago. He uses a theracycle as well as going to the gym and doing physio exercises, swimming and playing wheelchair basketball. We know three girls with SPG11 but no boys!

  • formerEURORDISstaff | published 7 months ago | Originally written in English

    Here is one other person on RareConnect with a son with SPG11:
    https://www.rareconnect.org/en/community/h...

  • hilaryruth | published 7 months ago | Originally written in English

    Thank you, Rob.

Leave a comment

You must be registered and signed in to leave a comment. Sign in now.