Jackie had a seizure at the store!!!
 

OMG I am freaking out, I think he has had them at school too, we were shopping, he was pushing the cart one minute and then BOOM he crumbled to the floor! :eek: :( :confused:

He had this happen at school too about a year ago, I am really afraid, I was getting my phone out to dial 911 when he got back up, that helped calm me down. I don't know what could have triggered this seizure today but it scares me about the pool now. I am afraid he can't dive off the board or he might drown if he had one in the water! :eek: :( :confused:

I am really upset. So is Jack, too late to call his Ped Neuro doc, and I don't know if she's going to want to ramp up on the lamictal he takes 200 mgs twice a day right now, maybe he needs a bit more with his weight gain...I don't really know. But I know that I don't want to see this happen again! We were talking about weaning him off the lamictal if we saw no more seizures but this kills that right away. :(

Maybe he's not going to out grow them. I am so upset. :(

Pam

Seeing a seizure is very hard. I know. I also know that you have
to live each day. So just remember he is back and dealing with things.

I would work on talking to him about how he can't dive in the pool but
maybe you could still go to the pool. Not sure though how you feel
on that.

I would definately call the neuro tomorrow. Not sure if it was 200 twice
a day or just 200 all day.

Donna

I think I have heard of folks taking a total of 500mg of lamictal but am not sure.
I am sorry that this happened, how scarey.
((((HUGS))))
beth

Dear Pam,
I'm sorry that you are dealing with this.

M.

So he's been okay today but man I am so worried about him. :( I am watching him like a hawk. :(

Awww, a seizure is so scary. I remember my son's first seizure and it was something I never want to see again. he did out grow his, they were febrile seizures. I pray the same for Jackie.

Did you get a hold of the doctor's office? Whenever my mom has a seizure now they want a blood test to check levels.

:hug:

Nope they never returned my call so I am calling first thing in the morning. They need to get back to me right away on this because I need to see his dose increased before we refill his medication, he hasn't had a dose increase to compensate for his weight OR onset of puberty for like five years...He's been stable on 400mg a day and I think he needs jacked up a bit or something else added...I definitely am frightened by this. Thanks for the hug Sandy. :hug:

Pam

You definately want to have his blood level checked because 400mg
is a good dosage. But because its all he is taking it might not be enough.

Or he might need a small dosage of something else added too.

Donna

I really hope they get back to me tomorrow, I hate waiting! I need to know NOW what they want to do. :(

I don't know maybe it's something to do with his med being te generic and not brand anymore. Who knows? :(

I just wanted to buzz in and let you know that you and Jackie are in my prayers...

Seizures are soooo scary. I used to be an EMT and seizures were one thing that scared me most.

I hope you get a hold of the doctor today...

:hug:
Abbie

Thanks Abbie, I hope so too, I can't imagine waiting all weekend without some kind of answer as to what we should do. :( Thanks for the hug. :hug: Doing our best here to hang in there. :)

ETA: THey just called, they want us to increase his lamictal by 100 mgs at night. so 200 in the morning and 300 mgs at bedtime. Hopefully this will be enough to help him. I'll keep you all posted, they want us to do some labs too. We'll be getting that in the mail and go to his pediatrician to get them done. Hopefully it's going to be better now. Only time will tell. :(

Dear Pam,
THanks for the update.
I hope that the new dose will help.
M.

Me too Mari, I am so glad they called when they did, the office was open but they don't start taking calls until after 9am. Hoping the get the new dosage called in today. It doesn't look like a good pool day today with 50 % chances of rain so we're staying home. Just as well if you ask me. :)

Pam

Maybe you can locate some other things for him to do when it rains.

And then even when he seems to be having bad days.

Sending you some hugs.

Donna

We actually have a couple of bins for him that have some simple toddler like games and he likes to sort cards and things. So it wasn't too bad today. He also went on the computer for awhile, that helped. :)

I am glad they called you back and hopefully the pharmacy filled the prescription without any delay.
You have your hands full, alot on your plate that is for sure.
HOpe you are doing ok thru all of this.
(((((HUGS)))))
beth

They didn't call in the RX yet. Darnit! But hopefully when I call in on Monday they will and it will get filled right away since the silly nurse didn't even think about it, just about hung up before she replied that they would get it called in after I asked about it. Oh well, I am grateful for their help. This is the scariest stuff to deal with...I am doing better though.

Today I got a LOT done, I cleaned up my CPAP machine and whatnot and am committing to use it again. I am going to make sure that I use it more because I have been so tired during the day and the machine really helps with that. Also I got Jack's surgery scheduled along with getting the respite set up for helping me with the recovery he's going to need. So I feel good about that. :)

Sounds like he needs an assesment to meds or dose, as he grows or gets use to a dose.
My ds scared the crap out of me over the winter with major grand seizures and we are waiting now 6 months on the cancelation list for an appointment with the neuro on the access card. SUCKs. After losing one child I am scared every single day watching him sleep, sit, walk everything until we have answers.

I hope that you can find out what is wrong and reslove it swiftly.

With only two of these drop seizures in a year I am concerned, but not freaking out so much anymore. I think the increase in lamictal will do the trick, if it doesn't we'll work with our options later, we are SO LUCKY to be able to get in to see this doctor within a couple of months of trying to make an appt. I am so sorry you're having to deal with grand malls Di, I hope you get in to the neuro soon and find some relief for your DS. :(