Hope is on her last week of school! Yeah! She has done awesome this year! Her ADHD meds make such a big difference in her. Not to mention it makes the attitude and memory problems subside too! Still not sure what I am going to do to keep her entertained over the summer!
Saturday night I had an amazing birthday party! I even rode a mechanical bull! That was a sight! Apparently I have a talent for walking off the bull when I am done rather than face planting! I came home Sunday and took Hope to Urgent Care. She sprained her ankle, again. I was a little freaked out. The dr said he saw a cyst like structure on her bone and would call the following day if I should be worried about it. (After a specialist looked at it) No call so I guess we are good!
Meanwhile, I rearranged and am working on getting a pub height counter that is wide enough for her stander to fit under. Her legs are really tight in the mornings and she is unable to walk. Since she has had the sprained ankle, she is cruising the whole house in her chair. She has a certain freedom and happiness in it. Needless to say we are keeping things picked up as best as possible for her to cruise around (and do donuts where ever possible!). We received her new orthotics on Monday, so when she can bare weight again she will use them. I bought some gel pad things to go on her knees so she stops rubbing them raw. $66 for tiny little gel sleeves! Everything in the disabled community is a rip off! Her feet have gotten really bad too (skin integrity issues). I'm having a hard time keeping up with everything. Don't know why!
I don't know how parents know the balance between pushing your kid to walk and just giving up, for lack of a better term. I'm not giving up yet but don't think I am pushing it as much.
I go to learn about a possible job opportunity tomorrow. Hopefully it can help take some of the strain off my family. My poor college life is taking a toll!
My brain is beyond fried, hard test tomorrow. I hope this made sense!
It has been a rough couple of weeks for our family. There are always issues going on behind the scenes, but these past couple weeks have been beyond overwhelming.
Tuesday, May 18, 2010
Tuesday, May 4, 2010
Spasticity explained with options
There have been questions on exactly what Hope's spasticity is and what the dorsal rhizotomy (cutting the nerve fibers) is. I found this article on neurosurgerytoday.org that has a great explination. I have also made some bolded comments within it regarding Hope specifically. Hope this help explains where I am lacking explination.
Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and can interfere with normal movement, speech, and gait. Spasticity is usually caused by damage to the portion of the brain or spinal cord that controls voluntary movement. The damage causes a change in the balance of signals between the nervous system and the muscles. This imbalance leads to increased activity in the muscles. Spasticity negatively affects muscles and joints of the extremities, and is particularly harmful to growing children.
Spasticity in Cerebral Palsy (CP)
In a person with CP, brain damage has occurred. For unknown reasons, the damage tends to be in the area of the brain that controls muscle tone and movement of the arms and legs. Therefore, the brains of people with CP are unable to influence the amount of flexibility muscles should have. The command from the muscle itself dominates the spinal cord and results in muscles that are too tense or spastic. People born with CP do not have deformities of the extremities present at birth, but develop them over time. Spasticity of muscles, along with the limitations on stretching and use of muscles in daily activities, is a major cause of these deformities.
Symptoms
Spasticity may be as mild as the feeling of tightness in muscles or may be severe enough to produce painful, uncontrollable spasms of the extremities; most commonly the legs and arms. Spasticity may also create feelings of pain or tightness in and around joints, and can cause low back pain.
Adverse effects of spasticity include:
Muscle stiffness, causing movements to be less precise and making certain tasks difficult to perform
Muscle spasms, causing uncontrollable and often painful muscle contractions
Involuntary crossing of the legs
Muscle and joint deformities
Muscle fatigue
Inhibition of longitudinal muscle growth
Inhibition of protein synthesis in muscle cells
Additional complications
Treatment Options
Physical and occupational therapy (doing)
Oral Medications (untollerable side effects)
BTA, also known as Botox injections have proven effective when used in tiny amounts, by paralyzing spastic muscles. Injection sites are carefully determined based on the pattern of spasticity. (just did and doesn't last this long)
When Botox is injected into the muscle(s), the release of acetylcholine is blocked, resulting in a relaxation of overactive muscles. The injection(s) generally take effect within a few days and last about 12-16 weeks, until new nerve endings grow back and the affected muscle(s) recover. Functional benefits may last longer than this. There are limitations in the number of injections that can be administered.
Surgery
Intrathecal Baclofen (ITB) (what was done and failed twice)
In severe cases of spasticity, baclofen can be administered through a pump that has been surgically implanted in the patient’s abdomen. By delivering baclofen directly to the spinal fluid, a much more powerful reduction in spasticity and pain can be achieved, with fewer side effects. ITB has been found to be extremely effective in treating spasticity in the lower and upper extremities.
Selective Dorsal Rhizotomy (SDR) (what I'm contimplating)
In SDR, the neurosurgeon cuts selective nerve roots (rhizotomy), the nerve fibers located just outside the back bone (spinal column) that send sensory messages from the muscles to the spinal cord. SDR is used to treat severe spasticity of the legs that interferes with movement or positioning. By cutting only the sensory nerve rootlets causing the spasticity, muscle stiffness is decreased, while other functions remain intact. Decreasing spasticity can improve mobility and function, and help prevent severe muscle scarring (contractures), as well as joint and bone deformities. It is utilized most effectively in patients with CP who meet specific criteria. Individuals with the following criteria are not candidates for SDR:
Patients who have experienced meningitis, congenital brain infection, congenital hydrocephalus unrelated to premature birth, head trauma, or familial disease
Patients who have mixed CP with predominant rigidity or dystonia, significant athetosis, or ataxia (the reason there is hesitation)
Patients with severe scoliosis
Patients who will not make functional gains after surgery
The benefits of surgery should always be weighed carefully against its risks. Randomized, controlled clinical trials have demonstrated that a large percentage of CP patients report significant reduction in spasticity and improved function after surgery. However, surgery is not an option for all cases of spasticity.
Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and can interfere with normal movement, speech, and gait. Spasticity is usually caused by damage to the portion of the brain or spinal cord that controls voluntary movement. The damage causes a change in the balance of signals between the nervous system and the muscles. This imbalance leads to increased activity in the muscles. Spasticity negatively affects muscles and joints of the extremities, and is particularly harmful to growing children.
Spasticity in Cerebral Palsy (CP)
In a person with CP, brain damage has occurred. For unknown reasons, the damage tends to be in the area of the brain that controls muscle tone and movement of the arms and legs. Therefore, the brains of people with CP are unable to influence the amount of flexibility muscles should have. The command from the muscle itself dominates the spinal cord and results in muscles that are too tense or spastic. People born with CP do not have deformities of the extremities present at birth, but develop them over time. Spasticity of muscles, along with the limitations on stretching and use of muscles in daily activities, is a major cause of these deformities.
Symptoms
Spasticity may be as mild as the feeling of tightness in muscles or may be severe enough to produce painful, uncontrollable spasms of the extremities; most commonly the legs and arms. Spasticity may also create feelings of pain or tightness in and around joints, and can cause low back pain.
Adverse effects of spasticity include:
Muscle stiffness, causing movements to be less precise and making certain tasks difficult to perform
Muscle spasms, causing uncontrollable and often painful muscle contractions
Involuntary crossing of the legs
Muscle and joint deformities
Muscle fatigue
Inhibition of longitudinal muscle growth
Inhibition of protein synthesis in muscle cells
Additional complications
Treatment Options
Physical and occupational therapy (doing)
Oral Medications (untollerable side effects)
BTA, also known as Botox injections have proven effective when used in tiny amounts, by paralyzing spastic muscles. Injection sites are carefully determined based on the pattern of spasticity. (just did and doesn't last this long)
When Botox is injected into the muscle(s), the release of acetylcholine is blocked, resulting in a relaxation of overactive muscles. The injection(s) generally take effect within a few days and last about 12-16 weeks, until new nerve endings grow back and the affected muscle(s) recover. Functional benefits may last longer than this. There are limitations in the number of injections that can be administered.
Surgery
Intrathecal Baclofen (ITB) (what was done and failed twice)
In severe cases of spasticity, baclofen can be administered through a pump that has been surgically implanted in the patient’s abdomen. By delivering baclofen directly to the spinal fluid, a much more powerful reduction in spasticity and pain can be achieved, with fewer side effects. ITB has been found to be extremely effective in treating spasticity in the lower and upper extremities.
Selective Dorsal Rhizotomy (SDR) (what I'm contimplating)
In SDR, the neurosurgeon cuts selective nerve roots (rhizotomy), the nerve fibers located just outside the back bone (spinal column) that send sensory messages from the muscles to the spinal cord. SDR is used to treat severe spasticity of the legs that interferes with movement or positioning. By cutting only the sensory nerve rootlets causing the spasticity, muscle stiffness is decreased, while other functions remain intact. Decreasing spasticity can improve mobility and function, and help prevent severe muscle scarring (contractures), as well as joint and bone deformities. It is utilized most effectively in patients with CP who meet specific criteria. Individuals with the following criteria are not candidates for SDR:
Patients who have experienced meningitis, congenital brain infection, congenital hydrocephalus unrelated to premature birth, head trauma, or familial disease
Patients who have mixed CP with predominant rigidity or dystonia, significant athetosis, or ataxia (the reason there is hesitation)
Patients with severe scoliosis
Patients who will not make functional gains after surgery
The benefits of surgery should always be weighed carefully against its risks. Randomized, controlled clinical trials have demonstrated that a large percentage of CP patients report significant reduction in spasticity and improved function after surgery. However, surgery is not an option for all cases of spasticity.
Saturday, May 1, 2010
Semester 1 done!!
I have had a week of much needed spring break!! I ended the semester with a 3.6 GPA! 3 B's and 5 A's.I start my next semester on Monday with a tan! My main goal for my break! I got a lot of work done but not as much as I wanted. It will still be there tomorrow though! Today I spoke at Phoenix Children's Hospital in front of about 100 people for my favorite organization. I am trying to convince them to hire me part time. We'll see! Most of you know one foster boy went to an adoptive home a couple weeks ago. Well, our 2 girls will probably be moving into an adoptive home this week. It has broken our hearts even though it is a very good thing for them. We will have 1 boy left. I don't know what we will do with such a quiet home! I think I might retire my foster license. I don't have a lot left in me. I don't think I can continue, hence the part time job. I'm not sure how it would work with my fieldwork, but I'm sure something could be done.
I met with Hope's school and as soon as the doctor signs a piece of paper, we should be good to go! Since she has the ADHD diagnosis, which gives her an additional Special Education Qualification, her funding will be much greater. She will have resource classes for English and Math to start, maybe more later. They have also agreed to provide equipment like a laptop to minimize her handwriting. Hopefully things will be better this time around! They are excited about having Meg come along too! Her school ends the end of this month and she will start local public school the end of July.
Other than that, we are still waiting on insurance and doctors to shuffle papers. One of these days Hope's lazy mom will actually order her new race chair. Measurements are done, just need to make the call now.
I am approaching a landmark birthday rather quickly. My friend is throwing me a party and I am beyond excited! However, getting old has reminded me that I am still hoping Mr Right will come walk along my side one of these days. My life scares guys, rightfully so, but for some reason they think they need to have a bunch of materialistic things to offer me. (Redbox and Little Caesars is a great night to me!) I've been flying solo for almost 8 years now, I would scream if someone wanted to walk into my life and take it over! Gradually helping over time would be nice! Hopefully someday I will meet a guy that doesn't set the floor on fire when he hears about my life. As most would say, I just weed out the wrong guys quickly! If I get this part time job, I will be working at the disability empowerment center. Hello opportunity!
Thank you everyone for your continued support and prayers! I promise I will get more pictures posted soon!
I met with Hope's school and as soon as the doctor signs a piece of paper, we should be good to go! Since she has the ADHD diagnosis, which gives her an additional Special Education Qualification, her funding will be much greater. She will have resource classes for English and Math to start, maybe more later. They have also agreed to provide equipment like a laptop to minimize her handwriting. Hopefully things will be better this time around! They are excited about having Meg come along too! Her school ends the end of this month and she will start local public school the end of July.
Other than that, we are still waiting on insurance and doctors to shuffle papers. One of these days Hope's lazy mom will actually order her new race chair. Measurements are done, just need to make the call now.
I am approaching a landmark birthday rather quickly. My friend is throwing me a party and I am beyond excited! However, getting old has reminded me that I am still hoping Mr Right will come walk along my side one of these days. My life scares guys, rightfully so, but for some reason they think they need to have a bunch of materialistic things to offer me. (Redbox and Little Caesars is a great night to me!) I've been flying solo for almost 8 years now, I would scream if someone wanted to walk into my life and take it over! Gradually helping over time would be nice! Hopefully someday I will meet a guy that doesn't set the floor on fire when he hears about my life. As most would say, I just weed out the wrong guys quickly! If I get this part time job, I will be working at the disability empowerment center. Hello opportunity!
Thank you everyone for your continued support and prayers! I promise I will get more pictures posted soon!
Subscribe to:
Comments (Atom)