We've been on yahoo support groups for various things; infantile spasms, epilepsy, cp moms, homeschooling special needs, special child exchange group. They have all helped tremendously with questions we might have along the way. I strong suggest looking into them if you haven't already.
This weekend we attended our first (live and in person) support group. It was arranged through our PMR head nurse at the Children's Hospital. I'll be honest with you, if we hadn't had a doctors appointment the week before, and Debbie (the nurse) hadn't asked that I bring Daniel and his AAC device, I probably wouldn't have gone.
Cause I've always had this thing with being in rooms with many people, I dread it. I dread the idea of getting there on time, the whole set up. But once I get there, I always have a good time. So I'm glad I went. I'm glad we went. It got Daniel use to being around a large group of people, and he did awesome with his sensory issues (loud noises, tons of people, weird environment), and he was using his device out in public where people were asking questions of him.
So Thank you Debbie for "making" me attend and for all the information you have put together.
One of the cool things was he made it on the agenda for the meeting! How cool is that? :)
They had some vendors there that were available to get additional information for different therapies, meeting some companies that most likely you'd need to talk to at some point in time through your journey with CP. Then of course they opened it up for questions to ask the doctors that were there. Very informative. Plus it was just nice to go and meet some other people that are some where on the same road you are. Its nice to be able to help other people avoid the giant pot hole that you know is in the road ahead of them. Its also nice when parents of the older kids (18+) give you an idea of the different things you'll need to encounter along the way. Things you hadn't even thought about like guardianship, social security, and other things like drivers licenses and wanting to do the things that typical teenagers will do.
So I thought I'd share a tad bit of some of the information, just in case it might help someone along the way. Once your child is diagnosed, people start to assume that you have some medical degree and don't need things explained, so we often walk around in a bit of a fog regarding some of the terminology.
This little blurb happens to apply to Daniel. Sometimes knowledge will stop people from being hesitant to approach Daniel and interact with him. The spasticity he has might make him a little different on the outside, but on the inside - he is just like anyone else, he wants to play, have fun and be accepted just like you.
What is spasticity?
Spasticity is a muscle tone disorder in which some muscles are overactive (shortening and tightening) - causing stiff muscles, awkward movements, and exaggerated reflexes. Spasticity is seen with cerebral palsy, traumatic brain injury, stroke and spinal cord injury. Spasticity occurs when the brain or spinal cord is injured, causing nerve signals to over-stimulate muscles.
The degree of spasticity can vary from mild muscle stiffness to severe, painful and uncontrollable muscle spasms. Spasticity can affect a child's comfort level and movement, making it difficult to do activities such as sitting, eating, standing, dressing, and walking. Spasticity can also cause muscle contractures, which are fixed, abnormal joint positions that may lead to deformity or the inability to move the related body part.
In addition to spasticity, children and adults with brain or spinal cord injuries may also experience other neurologic (nerve-related) conditions, such as weakness and poor coordination. These other conditions may actually be more disabling than the spasticity. Reducing the spasticity may be helpful in these situations, but does not "cure" the condition. In some cases, some spasticity in the legs may help with standing.
Besides, spasticity, there are other muscle tone disorders that can cause abnormal movement. Two examples are: dystonia, which causes abnormal posturing; and choreoathetosis or writhing movements. Management plans for these disorders may differ from management plans for spasticity.
Spasticity can be managed in many ways - ranging from simpler methods such as stretching, bracing and positioning, progressing to use of oral medications, to intramuscular injections and/or surgical procedures. Using medications may be helpful when spasaticity happens in many parts of the body. In children with cerebral palsy, percutaneous tendon lengthening is a common form of surgical management. Currently, muscular injections and new surgical methods are being used to effectively improve function and mobility at various levels.
Daniel has what is called spastic quadriplegic cerebral palsy
Typically when you think of CP, you think that there was a traumatic birth and lack of oxygen. This is not the case with Daniel. He had a typical birth, but during the pregnancy his brain did not develop typically and it has a malformation which in turn causes his CP.
To date so far we have done the daily medication to help with the spasticity, we have done the botox along with the alcohol block (December 2011). We also use his leg braces, and wrist braces to help him not get contractures. We have also done the casting (which we will be doing again in the next few months for his ankles). We have also been in Occupational and Physical therapy for the past 6 1/2 years, multiple sessions per week.
Other things we have tried such as LOKOMAT, ABR therapy, ABM, swimming, and hippotherapy. So if anyone wants our take on them, I would be more that happy to share, just let me know I also generally have some contact information or will help you find it.