I don't have all the intricate details because Allison is the one who's done all the talking to the neuro, but basically from what I can understand, All of Dawson's test results came back negative for everything they were testing him for. That sounds like good news but actually I personally think its not. If we can find whats causing his seizures then of course they are easier to treat and stop. I have to tell ya, its a little disheartening to be at the same dose of meds that stopped them the first time and for some reason this time that same dosage is not working. Maybe its cause hes older and bigger, maybe maybe maybe.......
I'm running out of maybes....
One of the things he was being tested for was Dravet Syndrome. I guess I'm glad that test came back negative because its one of those " CATASTROPHIC" forms of epilepsy. Don't you love they way they label some of these syndromes. Its like being diagnosed with " TERMINAL" cancer. It just sounds so harsh. Never mind there are varying degrees of these syndromes. Very mild cases all the way up to very severe cases. But none the less we have to use the word catastrophic. I guess that's what scared me so much when I learned he had Infantile Spasms. You do all this reading about this catastrophic form of epilepsy and its so easy to get sacred our of your gourd. What a joy its been to watch Dawson thrive, and grow, and learn, and just be normal even though he has a catastrophic form of epilepsy. And there is still joy!!! Even though the seizures are back he is continuing to thrive, and grow, and learn, and just be normal, and that is nothing more than the goodness and greatness of God. We are hopeful and prayerful that we will once again gain control of the seizures.
This week has been just crazy fun!!! Ashlyn and Katelin are here for two weeks plus we have my niece here from Prattville. We have been out doing stuff every day and I ( and I hope the kids) have had a ball!! We've got some good pics and we will post them in the next day or so.
Please keep the prayers coming and we love you !!
Jeff and Allison
About Me
- Dawson
- Dawson was born Sept 4 2007 and was diagnosed as having Infantile Spasms when he was 2 months old. Infantile spasms are a rare seizure disorder. Our story is one of faith and hope. Dawson now has multiple seizure types as well as developmental delays. We are prayerful that we will be able to find a way to stop the seizure monster that lurks in his brain. Your prayers and support mean the world to us.
2 comments:
My nerves are all round up as Cami will take her last pill tonight of any kind of seizure med! Im so thrilled but so nervous at the same time thinking of what might happen! Wether it be now or down the road a seizure sneaking up on you is no fun and brings back all to many bad memories of what use to be! My thoughts are with you guys during this time!!!!!
(((Hugs))) from Camerans world ;)
Oh how we know how frustrating the not knowing is! On one hand you are thankful that it is negative b/c you never want something to be wrong, but on the other you just want "to fix it", whatever it is. So happy that Dawson continues to thrive. Way to stick your tongue out at IS little buddy!!
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