help, advice, anything

[sashasmom]

HI all I hope everyone had a good holiday and new year.
Sasha had her 2nd mri on new year's eve, and we overnighted(?) the disc to her dr @ san diego children's hospital. She's schedualed for a 24hr ambulatory EEG on Jan 17 with decreased meds. Has anyone else been through this? What should we prepare for? The hardest thing is that we don't even know how to tell her about the test in a way that she'll understand. (She's 3)
We've noticed that since her last seizure and the dr upping keppra dose at night she's been waking up between 2 &3 am, coming into our room and saying that bugs are crawling on her. We've checked her room-there are none. Is it poss that she's having seizures in her sleep and then waking up from them?
Has anyone had problems with their neurologist and gone for second opinion? We only have one pediatric nrueo office where we live, and we had to take Sasha to San Diego for secon opinion. We love the San Diego dr, but can't afford to keep going back and forth from Las Vegas. We've switched dr's here (same office just different dr) but they just don't seem to really care about the patient. What do we do? It's fustrating and sad that I have to fight with the office almost every time I call.

[RobinN]

what drug is she on... Rebecca just went through this.

Also, Rebecca had the 24hr video EEG last Dec. and it all went very easily. I think if you aren't stressed out Sasha will be okay. She will sit up in the bed and they will take time to put the wires on her head with glue. We took pictures of Rebecca that she was very proud of. Of course she had just turned 15. Then you are on your own for the most part. We played games, watched a bunch of DVD's, read books. She can get up and walk with the wires to the bathroom, but that is about all she can do. They will want her to stay within visual reach of the camera. She will sleep fine I am sure, while you get to try to sleep in a chair, with nurses coming in every hour to monitor your daughter.

Yes, the medical situation is very frustrating these days. I am in agreement with you. We are using our third neurologist, and as much as I like her, it is now my belief that they just don't have the answers to this disorder. I see that they just try one thing after another and then keep their fingers crossed. Sorry you are getting the raw end of the deal.

[Birdbomb]

HELLOOOO There! sashasmom

Ooo you only live a few miles from me! We live up by Nellis. I hear what you say about the peds doctors. You are in a a bad place in that aspect. There just aren't very many here dispite the size of this city! They all left out about 5 years ago when there was a major change in the malpractie laws.

I have never used keppra, but she could be having some kind of reaction. I know so many of these anti-epileptic drugs have a negitive reaction to behavor with kids. I really don't think it's a seizure thing but I could be wrong.

Here is the PDF on Keppra. You might want to have a look-see


((((sashas))))

[Dutch mom]

Hello Sacha's mom,

She's schedualed for a 24hr aeeg on Jan 17 with decreased meds. Has anyone else been through this? What should we prepare for? The hardest thing is that we don't even know how to tell her about the test in a way that she'll understand. (She's 3)

Perhaps it's an idea to show her pictures so she can see what she can expect?
You'll find pictures of a 24-hours EEG on a 3-year old Dutch girl on:

www dot pontier.nl/sein.html

(You have to fix the link yourself because I'm not allowed to post links as a newbee.)
You can't read the Dutch text but the pictures could be helpful for explaining to your daughter.

My boy used to have many seizures after awakenings. I can't tell for sure or it's the awakening causing the seizure as a trigger or the seizures are causing him to wake up.

Succes!

Mom of an 8-year old boy with the Lennox Gastaut epilepsy syndrome

[angel]

sashasmom,

I've also a few times have had the feeling of bugs crawling all over my skin after waking from sleep... it only last about 1 min or so... I if i were you would check her skin for tiny bumps (hives)or possibility eczema.... I'm taking 1000mg keppra vit b6 and some other meds... sometimes my skin feels really hot and itchy while sleeping... Keppra has caused dry skin & I have to watch harsh soaps etc...

for myself its not a seizure its some kind of skin reaction....

Love
angel

[montse]

Has anyone had problems with their neuro and gone for second opinion? .

I think we all have.

[brain]

Has anyone had problems with their neuro and gone for second opinion? .

I think we all have.

2nd, 3rd, 4th, 5th ....

I think sometimes we don't really want to
hear it; even though the 1st, 2nd, and 3rd
opinions all agree - we're hoping that they're
all wrong and it's something else...

Anything but ....

[DAVE1967]

HI all I hope everyone had a good holiday and new year.
Sasha had her 2nd mri on new year's eve, and we overnighted(?) the disc to her dr @ san diego children's hospital. She's schedualed for a 24hr ambulatory EEG on Jan 17 with decreased meds. Has anyone else been through this? What should we prepare for? The hardest thing is that we don't even know how to tell her about the test in a way that she'll understand. (She's 3)
We've noticed that since her last seizure and the dr upping keppra dose at night she's been waking up between 2 &3 am, coming into our room and saying that bugs are crawling on her. We've checked her room-there are none. Is it poss that she's having seizures in her sleep and then waking up from them?
Has anyone had problems with their neurologist and gone for second opinion? We only have one pediatric nrueo office where we live, and we had to take Sasha to San Diego for secon opinion. We love the San Diego dr, but can't afford to keep going back and forth from Las Vegas. We've switched dr's here (same office just different dr) but they just don't seem to really care about the patient. What do we do? It's fustrating and sad that I have to fight with the office almost every time I call.

IF I WERE YOU I'DE GO LOOKING EITHER ONLINE OR AROUND THE HOSPITAL NEAR YOUR HOUSE FOR A CERTIFIED DR & NEROLIGIST IN THE FIELD OF EPILEPSY & DON'T ASK FOR ANY OTHER DR'S GO FOR SPECIALISTS . EVEN IF THEY GET PARTIAL PAYMENTS THEY CAN'T TURN YOU OR YOUR FAMILY MEMBERS DOWN & OR AWAY . ITS AGAINST THE LAW FOR THEM TO TURN PAITENTS AWAY , YOU COULD HAVE A COURTDAY WITH THEM IF THEY TRIED TURNING YOU DOWN .TRUST ME ALL I HAD TO SAY ONETIME WAS "LAWSUITE" & THEY CHANGED THIER TUNE FAST BOTH TO ME & MY FAMILY MEMBERS . SO DON'T GIVE-UP KEEP ON TRYING OTHER DR'S , BUT BE SURE THEY'RE SPECIALISTS IN THE FIELD & ASK TO SEE THIER CREDENTIALS & OR RECORDS OF PLACES THEY HAVE WORKED FOR & AT . DON'T GIVE-UP & KEEP SMILING - DAVE