Lots of info to post this evening. Ill make it as brief as possible...
We were able to speak at length with Dawson's Neuro yesterday evening over the phone. She is such an awesome Doctor and purposely waited until after office hours to call us so she could take all the time needed to help answer a lot of questions.
Of course there is no way to know right now what transpired in his brain to make this new seizure type come out but I think she thinks its more of an age thing more than anything. Dawson is now 2 and she said more times than not, As they grow out of the Infantile Spasms, a new seizure type will develop. If this is going to happen, it usually happens between 2 and 3 years of age. We have made a few med changes and she said that its a possibility that we crossed that sacred seizure threshold allowing him to have a breakthrough seizure.
The plan????
November 9th we will head to UAB Children's Hospital for a ( get this....) 5 day video EEG!!
HOORAY we just love those things... And theres nothing like being in the hospital room with a two year old who is not sick... See, when kids are sick they don't mind just laying there in bed being good. Dawson is a mover and a shaker. Doesn't like being pinned down and I just cant imagine how we will survive 5 days in that hospital.
She did say that its a possibility that we will go ahead and do the Keto ( and/or) modified Atkins while there. Either way she wants him in the hospital when we do it so he can be closely watched. She also wanted him off of Topamax before we started the diet to lessen the chance of kidney stones while, but that also conflicts with the fact that coming down off of the Topamax could possibly be part of those awful seizures we saw the other day.
Its all very confusing but we are hopeful that the hospital stay will provide some answers for us. She also said that if they get what they are looking for on the EEG early then we could go home earlier but to go ahead and plan on staying the full week. So that's the plan for now anyway.
To address some questions......
Dawson has been on a B6 therapy before while on Keppra and it just didn't seem to do that much for him. Maybe we just didn't stick with it long enough for it to make a difference. Right now he is on a very very low dose of Kepprage but even at that low dose I can see a difference in how he acts when he gets upset about something.
Dawson did not, and under doctors advice, will not be getting any flu shots or any other shots as far as that goes. It is MY opinion ( among others as well) that these shots are the source of our problems. Once again, I am NOT anti-vaccination... I am only anti-vaccination when it comes to Dawson.
Follow the numbers here for a min...
Days after getting his two month shots he starts having seizures...
We finally find seizure freedom and he goes 360 days straight with No seizure activity and a clean EEG.
He then goes to the Doctors office and gets two shots because everybody thought it was safe to do them one or two at a time.
30 hours after those shots, and after 360 days seizure free, he is having seizures again and here we are.
So you do the math ,and then try to convince me that shots have nothing to do with this....
So no more shots for Mr. Dawson!!! EVER
Ok yeah, its a pretty sensitive subject for me. sorry
The good news............
We haven't seen any more of those seizures since Saturday evening. Just his normal clusters of spasms ( not that we any more happy about that) Its just that those others were So hard to watch. Absolutely heart breaking and its something that is etched in my brain forever.
Keep Dawson in your prayers as we muddle our way through the next few weeks. It should be interesting.
Jeff
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7 comments:
OK...so the title of the post did scare me a little. I'm glad that it's nothing urgent and that you are going to go in and sort all of this out. It's good to have a thorough doc...although there's no doubt that a 5 day EEG would be a headache for anyone! Dawson is certainly in my prayers.
I'm with Tera ... I thought you were on the way to the hospital .. like now.Not that the hospital is great ever.I am just relieved that you are not going due to an emergency.As for the shots ... I get it.I do.Zoey started her seizures 3 days after shots.They scare the crap out of me but ... I gotta go with her doctor, that I trust but I am STILL nervous.Maybe I don't hesitate as much because we know originally things began at her brain injury site.Who knows.I'm confused as ever.As for Dawson and the rest of you,you remain in our thoughts and prayers and were hanging in for the long haul.We're riding this thing till you get to seizure freedom again!
I hope the EEG goes well for Dawson. I hate those things but hoping you'll glean some useful information from them!
My son also reacted to his 2 month shots and will never receive anymore either, so I understand where you're coming from there!
Many prayers for Dawson!
Sounds like a good plan. 5 days is long, but maybe they will get the data early, or like your doctor said it would be a good time to get him adjusted to the diet. I am so happy he has not had any more of those seizures. It is scary as they get older, you just don't know what will transpire. However, I am hopeful that Dawson will one day soon have seizure freedom again.
I love you guys....and just hate that you have such trials to deal with. I hope Mr. Dawson will overcome these nasty seizures!!! He is in my prayers, always!
My heart goes out to you both for what you deal with and how in the world you handle it. I know you are very strong to deal with these situations. I pray for both of you, too!
Rudy
I went to this Keto clinic once and was like...I think you should be able to start Keto at home. Do you know...the whole room erupted with parents saying "NOOOOOOO!!!!" lol I've heard the initiation is tough...and it's a good idea to be inpatient.
If you guys are ready for this to be the next step...then it's probably a good time to start since you'll be inpatient anyway.
It's so hard...all these decisions and seizures and junk.
(((((hugs)))))
...danielle
Ok, the title scared the daylights out of me!! glad that it is a planned admission.
I would be willing to bet that you do not stay on VEEG more than 2 days, especially if he has several clusters a day. I defintely agree that being in the hospital with a "well" child BLOWS!! Co isn't one to lay still either.
C has had one big breakthrough seizure. (Let me say that very quietly!! Don't want to upset the seizure monster1) That was when we were playing around with his Depakote dose. I'm stunned that C hasn't started having a different type since he is over 3. I think that is one of the reason his neuro is stumped. As far as the vaccines, you have to make the right decision for YOUR child! Definitely sounds likely that they are the cause of Dawson's. Unfortunately, I don't know so much for Connor. He had his vaccines right when he turned 6 months & didn't start having seizures until 8 months 1 week old. So I don't know?? I don't know that we'll ever know. With that said, i hope Dawson never has another of those seizures!!!
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