It is with a heavy heart that I inform everyone that the one year seizure free party is canceled. It has only been 356 without a seizure, now we start over. The seizures have returned. They began Thursday night, with what looked like hiccups. He had fallen asleep on the couch and woken up, so I took him back to bed and was laying with him when it began. At first I thought maybe he was straining for a bm, but it continued and was rhythmic. I panicked, turned on the light and shouted for Jeff. He came in and we watched. "Its just hiccups", Jeff said. I agreed it looked like hiccups, just without the noise. So we told ourselves that is what it was. I told my dad the next day to watch him, just because I was paranoid....what if. He had a rough day, really fussy, but no "hiccups". Last night he had a fever and was really restless during sleep. He woke around 1:45 and the "hiccups" began again. Not too many, but I woke Jeff anyway, which I am not sure if he even really woke up. "Don't worry, its just hiccups", okay I tell myself but if it happens again, thats it, Im calling the Dr. Jeff wakes me around 5:30, "Ali, its not hiccups, he is having seizures." My heart drops... I knew it, we didn't want to believe it, but I knew it. We are just a week away from one year and this happens. Jeff is convinced it has something to do with the shots he received Wednesday afternoon. Shots, seizures, fever...not a coincidence. Me, I don't know. We have spoken to the Neuro this morning and we are doubling the dose of Topamax and she wants to call in Klonopin for him next week. We are also to call the office and make an appointment for next week and bring with us a copy of his immunization records. So, here we go again on this seizure roller coaster. He is still doing great, in spite of the return. No difference so far. He actually said his first sentence yesterday at my mom and dad's house. He had fallen down or something and said, "I want my momma!" He is such a momma's boy right now, I can't say that I mind.
So once again, we ask for your prayers. We don't understand why the seizures have returned, but have already handed it over to the Lord and trust in Him.
I hate to post this, it somehow makes it more true when you start telling people. We appreciate everyone's support and prayers. We love you all.
Allison & Jeff
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.
5 comments:
so, so sorry, but many prayers are being sent in Dawson's name and I am sure the Lord will take care of him! I am here for you guys, please know that.
I love you all,
Rudy
Oh my goodness, I felt nauseous reading this. I can't believe it! I really thought, out of all the kiddos out there, that Dawson was completely in the clear! Ugh, those stinkin vaccines. I just don't know about that anymore. We were this close to starting Reagan's back up again. Now I don't know. I can only imagine how upsetting this must be, but as we all know God has a plan that's so much bigger than we can even imagine. Sending lots of prayers and love your way!
Tera
My heart is broken. And the memories are rushing through my mind so fiercly...that my ears are literally ringing. I remember when Trevor's seizures came back...telling myself that I was nuts. That I WANTED him to have seizures. That I was an attention crazy sicko. I waited weeks...and didn't even tell Jonathan. Until the day that it happened in front of Jonathan...and he was sickened too.
I'm just so sorry...
I hope that the increase of Topomax works.
And know that we're lifting you in prayer. We know the pain of having your world rocked the second time around...
((((hugs))))
...danielle
this just stinks. absolutely 150% stinks. i really have stronger words for it but i'm trying to watch my potty mouth. i'm absolutely devastated about this. i hate seizures so bad right now. this is just not right. praying that the topomax increase helps. try to keep the faith that he HAS beaten them before & he can do it again!!!
I am so sorry to read this. I hope it's a small detour on Dawson's path. We've had these too and they stink. Hopefully the med increse will do the trick.
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