Sorry for the delay since the last post.
The past couple of weeks are a reminder that sometimes you take a step back. We have had to sit and watch Steve's strength diminish to where standing transfers require much more effort on our part. The swallow test has been postponed again due to a decrease in the control of facial/mouth and throat muscles and of course Steve is not talking as he was before.
As a result of the seizure Steve has to be on Keppra which really affects him. Doctors are planning on increasing the dose, and Steve should have to be on it for 2 years to be safe. We have also discontinued the Amantadine totally as that could also have contributed to the seizure.
I find it so hard to believe that a 45 second seizure could put Steve in such a situation. We know the seizure did no harm to him and that it is the Keppra that is causing these symptoms. The discontinuation of a stimulant and the addition of seizure preventative medicine has really had an adverse effect. The Neurology doctors (we have them now that a seizure has occurred), are the ones making these recommendations. Our rehab doctors are working with us to try and find an appropriate medication "cocktail" to get Steve back on track.
They have extended Steve's stay again, to August 15th.
Throughout all of this, Steve continues to believe he is no worse now than before, and of course his work ethic has not changed. There are also times where Steve seems to be his old self, usually in the evening.
We have been granted permission to try practice swallowing of various substances and Steve has had his first taste of pudding, ice cream, and very small pieces of a Graham cracker - since February.
We have also noticed, that there are times when Steve can hold his head up, walk well in PT , and communicate verbally in Speech. They say that the body can "get used to" Keppra, and maybe we are seeing the beginning of this.
We also have an appointment with the Neurosurgeon that replaced the bone flap, and plan to discuss the latest head CT with him.
You may ask why not just decrease the Keppra? We are told that the consequences of another seizure could in fact be anywhere from mild to fatal. Given that answer, we cannot rush in to anything.
With the help of your positive thoughts and prayers we have made it through worse than this. We will get Steve back on the positive track, believe it!
Thank you all.
Rob
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7 comments:
I too have had a couple seizures. I am not in Steve's situation but I can tell you of my experience.
I had 2 grand mal seizure in the matter of 5 hours from each other. I have been seeing a neurologist since that time (3 yrs ago). They have no idea and have found nothing that can determine the cause of mine.
I am on a medication called Lamictal currently. This is another anticonvulsant drug that might be a possibility for Steve. At first the drug was difficult for my body to adjust. I was very tired and wore out in the beginning, but after the first few months my body developed a tolerance for the medication and it really doesnt have any effects on me anymore. Other than no more seizures.
Just thought that I would share that with you to let you know about this medication as well.
I am a complete stranger to your family, but I heard about your situation from Russ at BY. I continue to check for updates on the blog. Thanks for keeping everyone informed. I will keep praying for your family and Steve.
Rob~
I sent the link for the blog to a friend of mine who for many years was a manager with DMC Head Injury/Rehab. I have asked her if she might be able to provide some tools of research, etc from her experiences over the years. Hope you don't mind.
To the family stay strong through the highs and lows, God has brought you this far just keep your eyes on him. To Steve you are a true blessing to many and were all with you through your battle in thought and in prayer and God can do all things!
Dear Steve and Team,
I read your post and didn't know what to say or what could/should be said. I felt sad for Steve and the team. After many tries at words I will say what is in my heart.
I am sorry to hear about the set back. Your right it is only a set back, not the way things will be. Stay strong and know we send love and prayers to you all.
God Bless.
Rob - thank you for the updates, even those that must be harder for you to write. It serves as a reminder that the road to recovery is often met with roadblocks, where detours must be pursued. We pray that Steve's body becomes accustomed to the medication as the first author related, and he can resume his therapy as fervently as before! You're always in our prayers....the Stones
Hey all from the South...
I hope Steve is doing better with his meds, a lot of time it does take awhile for your body to adjust to new medicines, but if the symptoms continue, I would keep on the Drs. because there has got to be something that can control the seziures and doesn't make him so tired...there are older meds and a lot of newer ones. In fact Alexis was on one for her arm pain and the nerve pain she was having, she was on Neurontin (one with the least amount of side affects...it can be started at 300 mg and you can take up to 3600 mg). We gave it to her at bedtime. But there is Lamictal, Gabitril, Topamax, Lyrica, Klonopin, Depakote, Tegretol, Dilantin just to name a few, and I am sure you have looked at the internet and seen all of them. My one question is why did they take him off of the anti-seizure medicine he was on in the first place??
But in this day and age it truly is coming up with the right "cocktail" unfortunatly. I hope they are able to do that sooner than later. Hope Steve is still getting up and around, we are thinking about Steve and all of you up in Michigan and your in our prayers. We are off to our last week of summer vacation and then back to school a week from Monday 8/11...YIKES!!!
Love to all,
(Aunt) Cheryl, Uncle Rick, Alyssa, Alexis and Ryan
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