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Update on my son: piog

Posted by on Mar. 2, 2011 at 10:57 AM
  • 15 Replies

 So after 5 days in the hospital, a couple more seizures, an EEG, lumbar puncture, and MRI he was released! He had to stay on seizure meds and have his blood levels monitored. I'll have to watch him more closely under stress, illness, or when he's overtired to watch for a seizure.

All in all, it could have been much worse than a seizure disorder, but I'm going to have to get used to the idea that I may ever have to see him have another seizure...something I'm not excited about :)

Here he is getting his EEG:

He was a total trooper. He had to stay up all night before the EEG and wasn't allowed to eat because of the anesthesia for the MRI and LP. It was SUCH a long day. He didn't get in for the MRI and LP until 6! He was such a good boy.

by on Mar. 2, 2011 at 10:57 AM
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Replies (1-10):
by on Mar. 2, 2011 at 11:03 AM

aww. he's such a cutie! congrats on bringing him home!

by on Mar. 2, 2011 at 11:13 AM

Thanks :)

by on Mar. 2, 2011 at 11:15 AM

 He's handsome!

Good luck with everything :)

by on Mar. 2, 2011 at 11:27 AM

Oh my, look at him, such a sweet face and being so calm....

by on Mar. 2, 2011 at 11:29 AM

 Well,we think he's cute :) He was a little swollen and red, and he was being SO funny! He was SO tired by then....

by on Mar. 2, 2011 at 11:32 AM

He looks like a trooper....poor little guy.....I wish him and you family best of luck and lots of strenght!!!XOXO

by on Mar. 2, 2011 at 12:08 PM

Aww I didn't even know this was going on, poor little guy :( 

My mom and brother both have (my brother died) epilepsy so I am very familiar with how scary it can be to see someone have a seizure. My brother was about 11 when he started having them. Drugs and alcohol used to make him have seizures (I know your kid isn't doing drugs or drinking but I am talking about prescribed drugs too). If my brother took a percocet or xanax to get high (because a Dr wouldn't prescribe those things) he would have one. I know it sounds crazy but a few Dr's would give my mom medicine that could have brought on seizures and killed her because they didn't know the interactions of the drugs. Make sure that you always know what you are giving him. I know it sounds like common sense (that I know you have) but my mom would have taken the medicine if I didn't tell her about it. Some people believe Dr's etc.

Certain foods made my brother have seizures also. Of course anything cooked with alcohol, even if it was a little table spoon of wine he would have one. I believe that he would get really sick and have seizures with I think steak. I will have to call and ask my mom because I don't remember exactly why.

I'm sorry that this is happening to him, it's such a horrible thing to go through for the both of you. He is very cute though, especially with wires all over ha. What meds did they put him on? If my brother of mom missed just one dose they would have a seizure for sure. I'm trying to think of all of the things that would set them off. We had to be so careful in our house, by the age of 8 I already knew to roll them on their side and put something in their mouth if it was a bad one. It was terrifying. Ugh your poor little boy, it's breaking my heart. What set it off in him?

by on Mar. 2, 2011 at 1:14 PM

 They put him on Keppra. They also gave me diastat for an emergency. So at least is a pretty "safe" seizure med, as far as they go.

They think that he was "predisposed" to developing it and that a virus set it off. A few hours after the first one he spiked a fever and then kept spiking them...then yesterday he broke out in a pretty convincing viral rash. The neuro said that sometimes if you're going to get illness, or like you said, food, or stress or lack of sleep will start it off. It was really scary.

Actually, it's so funny because I was taking my oldest to the doc for a bad cold, but then Jaydon started seizing IN the waiting room! Crazy, right? It was so awesome because his SATs dropped to 80 and they were able to put him on O2 right away. His first seizure lasted nearly 10 mins, so I can't imagine what would have happened had we been at home. The doc called the ambulance and off we went. At the hospital they consulted a neuro at Children's who had us taken by ambulance up there, where he promptly had another seizure. UGH. 

by on Mar. 2, 2011 at 1:16 PM

Oh that poor baby i remember doing that at age five, and being tired or ill does make it worse.  tell him i wish him the best of luck and hope that the meds work...

by on Mar. 2, 2011 at 1:19 PM

ok, he is so flippin adorable!
Glad ya'll got to take him home! How scary!

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