Friday, December 28, 2012

A Detour From Autism Avenue To Seizure Street :-(

The king had a few pretty big seizures today. His first in a while. He's been pretty much seizure free since starting on the med Depakote after his seizure related hospital stay in mid-October.

But today he had 3 "episodes" this evening that were the complex partial seizures where he's not there for20-30 seconds and his body looks & feels different. He hasn't had one like these since back in May.

Thankfully our new neurologist was "on call" this weekend and she called us back right away.

Her first question?

DR: "Is he sick?"

WIFE: "Well he's got the beginnings of a cold..."

DR: "Well I'll bet he's got a fever brewing. Kids with epilepsy are prone to having worse seizures during a fever."

On her orders, we are going to increase his dosage of depakote.

And we are going to give him Advil and/or Tylenol to keep the fever away.

This all happened around 6pm. And after that we tried to keep him contained on the couch.

And just as she predicted, his cold got worse in front of our eyes. No fever yet, but everything else...

If only the kid knew how to blow his noise and cough and spit up phlegm things might be easier in his life.

So this weekend looks like it's going to be home bound watching the king LIKE A HAWK.

This seizure/ epilepsy stuff is still relatively new to us and it can be really frightening to watch. And dangerous if he falls and hits his head. And now it sounds like every time he gets a cold we have to be prepared for a possible detour to Seizure Street.

Good times, good times. :-(

When does school and work start again?

16 comments:

  1. Thinking of you <3 sending good thoughts to both you & your boy

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  2. LIKE A HAWK - right!? my fiance has a condition where he passes out and just falls straight to the ground with not enough warning to help himself do so safely. SUCKS. I hope the King recovers quickly! You're in my thoughts.

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    1. I have struggled with the same as your fiance. Does he know what's causing it for him? I am still in the middle of trying to figure it all out with my doctors on mine.

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  3. poor little guy and poor parents...you're in my thoughts and prayers...Beth Bollig

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  4. They are starting to look closely at my oldest for seizures. I am not sure what to think anymore. They have been on both sides of the fence on whether or not they think he has them and they keep going back and forth. I've just found out this morning that he's been scheduled for a neurologist this coming March after being told rather sharply just before Christmas there was nothing to worry about. They have me all so confused.

    Praying for you, your wife, and Kyle. ((hugs))

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  5. I know these days. Our son treats us like we are stalkers when we are seizure watch. He leads us to another room, then shuts the door, or hands us our car keys and waves goodbye. Hang in there and may your watchful eye be welcome:)

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  6. Hugs & prayers for you, King, & the Mrs. I praise God my kids haven't developed epilepsy (that we've noticed). I pray they never do. It's a hard road & I'm thinking about y'all.

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  7. I always wished my ASD grandson could blow his nose. He just seemed miserable...He has now learned how and he will not wait for a tissue...So I am having to modify what I wished for to include "into a Kleenex, shirt sleeve, something except hanging down his face till I can get to him..." Oh, how I love my boy...

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  8. Very sorry to hear. My prayers are with you guys.

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  9. My son has his "big" seizures in his sleep. The only way we knew he was having them was several years ago, he was sick so needed some momma love and he was sleeping with me. He had 2 that night and after an MRI was diagnosed with epilepsy. He gets "blinking seizures" during growth spurts. We have been told that the type of epilepsy he has will increase in activity when puberty hits. So sorry you guys are having to deal with this!

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  10. Wow I started 9 years ago with starabsent kind n that caused me to b back in a diaper r pullup N 4 years ago ing type seizures absent kind 3-4 years ago had a severe grand mall lasted 10 min unconsciyos for,15+, min

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  11. That's scary stuff--my heart goes out to you both....I know exactly what you mean about blowing noses, spitting up phlegm...my son has had a chest cold for the last six weeks and I'm convinced it's hanging on so long because he won't spit out the phlegm or blow his nose.....and now his latest thing is taking big gulps of air which results in his burping and I believe upsetting his stomach...Autism sucks..

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  12. As a child I used to have very mild "absent" seizures connected with my severe migraines. I outgrew them (the seizures, not the migraines). I hope there is at least a lessening of seizures for the King as he gets older.

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  13. So sorry Kyle is having such a rough nite, I can't begine to imagine how scary this is for all of you. Sending prayers and hugs!

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  14. Sorry for the bad turn of events for you guys. Seizures are the worst!! ~Any parents with kids who have trouble blowing noses, sometimes you can teach this skill in the bathtub. You can practice whether or not the child has a cold/allergies. Seat child in the tub and say "blow" and then you, yourself, take an obvious breath in (mouth open), press lips together (exaggerate), and immediately blow air out your nose WITHOUT covering your face. Some kids can learn the steps by seeing them over and over with your face uncovered, and not having to cover their own faces. Learning to use a tissue is a whole different lesson for some kids. After a child can blow his nose in the tub 80% transfer to outside the tub; practice with or without stuffy nose and have plenty of the child's favorite reinforcers ready for trying with a tissue even near his face. Good luck. ~A Speech Therapist

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  15. I have just recently started reading your blog. I am an Early Intervention Developmental Specialist in Massachusetts and I deal with families just like yours every day. i only see the kids from age birth to three, so I don't get to know what happens after they "graduate" from me... I just had to tell a Mom that her son who is 29 months old that he is showing many red flags of autism and gave her some resources to call for a developmental work up... I really wish there could be some big breakthroughs soon...

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