No seizures in a year and then WHAM

[Michigan]

No seizures since last April, Neurologist appoint Monday everything looks great see you in a year and then on Tuesday Wham DD has 8 minute seizure and I think another one after her Grandparents dropped her at our house when she was in her room and her sister was in the family room. When I came home her eyes were glassy looking and she was confused for about an hour. Then today again another one this time only 2 minutes. They added an additional dose of her meds today and here is hoping there won’t be any tomorrow.

 

[Biscuitsmom31]

Here's hoping the additional medication does the trick.

 

[maryisme]

I"m so sorry to hear about your dd's recent seizures. As an adult who suffered with seizures as a child, I can relate to what you and your dd are going through.

Hugs to you and your DD.

Mary

 

[BeccaGrace]

I can totally sympathize! Both my dd and dh have seizures with generally good control and every once in a while we are hit out of nowhere with another one

My dh was seizure free for 5 years and had one while driving in '04...after that he was seizure free for a year. It was the same as your DD...the neuro says see you in a year and a week later he had one

My dd was also seizure free for a year and had a grand mal over Easter break. And dh had one the day before...so I totally know how frustrating it is to finally feel like you can relax a little and then get blind-sided like that It's hard not to get your hopes up that they might be fully under control when they do well for so long, and it makes it so much harder to deal with when they start again.

I hope the med changes will bring your dd good control...big hugs to you for being such a strong mommy

 

[SueM in MN]

I didn't have a chance to write much in the past few days.
I can understand how very frustrating it is. sending to you and your DD.

 

[oneangel]

My 7 year old son has seizures, some that have lasted as long as over 45 mins at a time. He has been seizure free since a week before christmas. Saturday monring, three weeks before heading to disney, he had another one. I was lucky enough to have diastat emergency medicine for him this time, and this is the first time I have had to use it on him. I would just like to say, before i even was done giving the medicine to him, his whole body came out of the seizure. This truly is a miracle drug. Hope all is well with your child .

 

[BeccaGrace]

I totally agree about the Diastat. I feel so much better knowing that I have it and it can stop Becca's seizures. And thank God for insurance...I was looking at the bill the other day and it had a $40 co-pay and that my insurance saved me over $750!!!!!!! OMG--I can't believe how much medicine costs!!!!!

It must be so scary that your son seize over 45 minutes--I can't even imagine how horrible that must be! I hope he is doing better and that you get them back under control.

 

[oneangel]

It is very scary when he seizes over 45 minutes. He didnt stop the first time till way after we got to the hospital. We leave for disney in two and a half weeks. Now I am getting scared, messing with his routine and all. I have my grandmother going with us, so she can stay with him while we are out late at night. I talk with his neuro tomorrow, so we will see what is going to happen now.Possibly an increase in his meds, hopefully we have a peaceful vacation. Has anyone ever had their kids have a seizure while in the park? What do you do? Call it a day? Go back and relax for the day? I am so scared this is going to happen. I know , once his seizure is over, he likes to sleep for a couple of hours, then wakes with a burst of energy.

 

[SueM in MN]

Has anyone ever had their kids have a seizure while in the park? What do you do? Call it a day? Go back and relax for the day? I am so scared this is going to happen. I know , once his seizure is over, he likes to sleep for a couple of hours, then wakes with a burst of energy.

My DD has had lots of seizures in the parks. We have not left the park when she had a seizure. It takes a while to get back to the resort and when we have gotten back to our resort, DD didn't want to sleep any more.
She usually sleeps for an hour or so and then wakes up and is ready to go.
Sometimes, we just tip her wheelchair back and let her sleep outside by a bench.
Sometimes, we have gone to First Aid. They have cots there in individual little cubicles (there is also a table and chair in each cubicle). It's dim, quiet and cool and your child can sleep there until he's ready to go again.

 

[Michigan]

She has 3 wheelchair game events every Friday and Saturday for the rest of May. I am worried about all the swimming events she is in and she is too but doesn't want to pull out of the swimming. I'm going to ask them to put her in the lane next to the lifeguard. I'm hoping that since she doesn't have them that often that maybe this is a seasonal thing. All of her seizures have either been in April or May.

 

[steffali]

My DD19 was seizure free for 12 years then just had several a few weeks ago. The neuro was starting to ween her off meds and low and behold hse had them so now she is on full doses of Depakote Sprinkles AND Keppra ughhhh!!! She has terrible mood swings, weight gain and very sensitive but it is better than having her seize. I know what everyone means, we were starting to be relaxed about it and I really felt she would never have a seizure again.... she proved me wrong of course.
I also have Diastat but we didn't have to use it the ambulance came and off to the ER we went. I hope to never have to use it.

 

[oneangel]

Was just curious how long you actually waited before using a dose of the diastat, and do you call the ambulance each time your child had a seizure?

 

[steffali]

The Dr.'s told me to wait 3 minutes and if she is still having a seizure give her the Diastat. She did have several seizures all under 3 min. but because they could not get her seizures to stop they had to give her meds through her IV at the hospital. I call the ambulance every time because she also has Hydrocephalus so they check to make sure the seizures aren't from a shunt malfunction.

 

[Michigan]

I call the ambulance every time because she also has Hydrocephalus so they check to make sure the seizures aren't from a shunt malfunction.

Megan has hydrocephalus too. I took her to the emergency room after the 3rd one to rule out the shunt.

I can't imagine 12 years and then one.

Megan also takes depakote 1 in the morning and 2 at night.

 

[oneangel]

My son also has hydrocephalus. And he also has a shunt, a vp shunt. He is 7 now, and he had it put in when he was 6 weeks old. When he had his first seizure last febuary, my first thought was it was his shunt. That is scary to witness the first time and not know what is happening. He has had one shunt malfunction, so i know what to look for. I was also told to wait the three minutes for the diastat. I was just curious, because if he had too many seizures, i would think that medicine would not be too good for him. Luckily I have only had to use it this once so far though.

 

[steffali]

Katalina takes 4 Depakote sprinkles in the am and 4 at night PLUS 2 Keppra in the am and 2 at night.
Her VP shunt was in her from when she was a few months old then at the age of 8 she needed to just have it cleared up through her distal end and now in Jan. (she is 19) we had to have her whole shunt revised. However that is when her seizures started back up.

 

[Michigan]

Megan had a shunt revision when she was 2 months old and that's it. Her shunt is now over 16 years old.

 

[steffali]

Does anyone have a programable VP shunt ? When they replaced my daughters in Jan. they used that type so they check it with some sort of magnet thingy and whenever she has an MRI we have to go to the neurosurgeon to have it adjusted on the outside of her head.

 

[Michigan]

Megan's friend has a shunt like that. When she got it she also had to have her shunt routed to her heart because her stomach wasn't absorbing the fluid.

 

[Schmeck]

Having worked with a student who had seizures (I was with her for 2 of them) I just wanted to add my prayers and good thoughts and white light to that being sent to all of you, and your beloved ones. I hope that the seizures go away as quickly as they have reappeared, and never come back. I know that this just isn't coming out right, but I'm just wanting to wish you all the best in getting the seizures under control, and I hope that there's a cure found soon.