Well looks like we can chalk up another failed drug.
Am is surprised? Nope....I'd be more surprised if something actually worked!
Yesterday was another 4 tonic spasms day with a slew of myclonic jerks and stuff.
Today...6....and we still have the evening to contend with!
I talked to Pam late this afternoon, gave her the update....
*4,4, 6so far on the tonics
* less clustered together
*same intensity
*still a ton of jerk and twitches
* a ton of drooling and spit
*some fussiness and irritability
Have no idea what is causing the increased drooling. Hudson typically does not soak a shirt, lately he has. I hope he is not getting sick.
Pam reported to Dr. Saneto, and called me back. I am suppose to see if there are any changes tomorrow. If there would have been a significant change...we would have seen it by now. I am to email him directly with any further question or concerns. I asked Pam if the doc has anything in his mind that he wants to try next.....for those of you that know him....he has to think about it....we all know Dr. Saneto is not impulsive....he gives much time and thought before making the next step.....sometimes I am impatient.....I admit it....I just hate these seizures to my core.
From a parents point of view on the way Hudson reacted to the steroid, I would rather have him off....he just seems happier, cuddlier, and more at peace. If I saw a huge change in seizures I could tolerate loosing my cuddle bug to crankiness...and the content look for the scowls.....but seizures and a crab-pot...not so much!
So that's it for now! It has been a long, exhausting week...and I am ready to have some fun this weekend!
Please keep our little one in your prayers....also for direction in our next step and drug course.....thanks for your love and support!
Hudson Tyler
Our sweet angel!
6 comments:
I admit Debbie I was really hoping the steroid would work. That poor babe needs a break! :( I am praying for Dr. Saneto to have wisdom in the next decision regarding Hudson's meds. Oh Debbie, how I wish all this would ease for him. My heart aches!
I am continuing in prayer. Much love to you!
always praying for your little guy!
Debbie I hate it so much that it did not help at all!!! I is so heartbreaking to not find something that will work. I am always praying..
Its sad to think with all the drugs out there that we cannot find the right combo for our kids. I thought it might calm them down a bit. Just throwing it out there but have they thought about putting him on a benzo like Klonopin/ Valium ? I don't know if its something he would be able to take but just an idea.
You know there are times when Finnian drools like there is a faucet on and then other times nothing. Sometimes it has been teeth that causes the increase of saliva.
Hugs love
Thinking of you and praying for a new med that will help!
Sorry this med didn't work! Praying you find one that does soon! Seizures are horrible and to have to watch your son have them all the time would be so depleting!
Hope you have a fun weekend...you deserve it! Love, Hugs and Prayers!!!
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