I AM THE GRANDMOTHER OF AN 8 YR. OLD THAT HAS BEEN DIAGNOSED WITH E A FEW DAYS AGO. I HAVE BEEN ON THIS COMPUTER SINCE TRYING MY HARDEST TO GET ANSWERS TO MY QUESTIONS. I WAS NOT THINKING OF WHAT MY DAUGHTER IS GOING THRU.SHE IS 30 AND THE MOTHER OF 3 BOYS 10YR.
8YR AND 1YR. OLD. WHEN I TALKED TO HER EARLY IN THE DAY I DIDN'T REALIZE HOW THIS HAS TOTALLY STRESSED HER TO THE POINT OF TRYING TO RUN AWAY FROM THIS PROBLEM. I NEED HELP!!! WHAT DO I SAY? HOW CAN I BE MORE SUPPORTIVE? WHAT CAN I ASK HER HUSBAND AND BOYS TO DO TO MAKE THINGS EASIER ON HER?
I AM A LOST FOR WORDS WHEN IT COMES TO THIS MATTER.
HELP !!!!!
PEDDY'S NANNER AND NONA'S MOM

First of all, let me say...KUDOS to you. For even acknowledging that there is a problem! My parents were in denial for quite a while!

The best thing you can do for her, is ask questions. Ask how SHE is doing, ask how he is doing, ask what the docs say. Just ask and sound very interested.

Let her know you are there for her, but don't just wait for her to ask you for help. OFFER. Offer to take the kids for a few hours, or overnight. Don't wait till she needs you. I would love it if someone would just come along and just take my kids for a few hours. I usually have to beg and stress to find someone on the days I need them...I don't even ask if it is just time for "ME"!!

So give her time for HER. Even if you just take the kids for a drive, or ice cream. It gives her down time.

Just be there, and let her know how much you care! If she needs other support, show her this site! There are a lot of moms on here who KNOW what she is going through!

My kids are 14, 11, and 7. My 7 yr old has "E". It was hard on my kids at first, but it does get easier for them.

take care!
Lindy

[This message has been edited by momof3mjt (edited 10-19-2003).]

Hi Peddy's Nanner
I am a single mom and I am the one with seizure activity. My parents were literally just there for me. They gave me breaks from other everyday stresses. They called to see how I was doing and helped me out the best they could.
I know that our situations are different but I am sure that there will be people on here that will respond that will give you some great advice. (they are great here)
Keep your chin up!! You & your family are in my prayers.
Felicia

FELICIA AND MOMOOF3,
THANKS, THANKS, THANKS FOR THE GREAT SUGGESTIONS.
I HAVE ALREADY OFFERED TO ACCOMPANY HER AND PEDDY TO HIS DOCTOR VISIT THIS TUESDAY. I TOOK YOUR ADVICE AND CALLED HER UP TO SEE HOW SHE AND PEDDY WERE DOING. SHE WAS FEELING A LITTLE BETTER. PEDDY WAS IN BED BUT VERY RESTLESS. MY DAUGHTER IS HAVING A HARDER TIME DEALING WITH HOW ACTIVE HE HAS BECOME SINCE HE IS ON THE DILANTIN, ADHD FULL BLOWN. HE IS STILL TAKING THE CONCERTA BUT THAT DOES NOT SEEM TO HELP AT ALL.
PLEASE KEEP IN TOUCH, I WILL LET YOU KNOW ABOUT HIS DR VISIT TUESDAY EVENING.
THANKS TO YOU AGAIN,
NANNER

Tiffani has times when she is extremely hyper too. She can get up in the morning and GO till she collapses at night. Her doctor has scheduled a 24 hour EEG,and he is thinking there might be some ADHD too.

I know her meds might have a little to do with her hyperactivity, be sure she brings it up with the doc so they can adjust meds if they think it will help!

take care! Lindy

I think that just by you coming on here and trying to gather all the information you can shows how supportive and caring you are. Listening and asking questions will help. I've been on here a couple of months since my son has been diagnosed and I've found the more I think I know the less I actually do know about E. It's been a constant learning curve and the information on here is limitless and the people supportive.

Good luck to you and yours keep us posted and maybe we'll all figure this out.

Hi Nanner,

Hope you are still around. Sorry I wasn't able to get to this last week. But, that's life in general and then add E. Wow!

My name is Lisa and I have 2 E kids. Jenny 14, was diagnosed in Sept with complex particals and absent seizures and Jake, 22 mths he was diagnosed this time last year. He has complex particals that generalize to grand mals and absent seizures.

Something that you may want to look into is a book called "Seizures and Childhood Epilepsy a Guide". This book answered so many questions for us. You may also want to check out the book "The Out-of-Sync Child". This book deals with sensory intergration dysfunction in kids. After reading this one, I understand Jenny's constant need for movement. Jake's been diagnosed with this dysfunction, but, I know Jenny deals with it as well.

Jenny is ADD and is taking Concerta as well as Tegratol. So, I know first hand what you're talking about. I also see Jake going down this path as he gets older. But, hopefully since we "caught" it early with him it wont be as bad.

Now, for your real question. First Nanner, you are doing the right thing by helping out as much as you have. It's going to take your family some time to adjust to the idea of seizures. Your daughter may experiance some of the same issues she would if she lost Peddy. Anger, denial, fear. There is a grieving period for parents (and Grandparents). These are real emotions please don't discount them.

I tell parenets when they first come here it's OK to be angry, it's OK to be scared... but denial is a wicked place to go when your child is counting on you for help. AND any energy spent on pitty or blame is waisted. Put that energy into educating yourself about what he is going through.

Be sure she's getting enough rest. If he's seizing at night she may be up off and on at all hours. Help her take care of herself, bring in dinner one night, do the grocery shopping one week, toss a load of jeans in the washer.

My parents are out of state. We were well into treatment before they saw Jake. They missed the weeks and weeks of him not being able to lift his head to eat, of not being able to sit up on his own, or not being able to grasp a toy. They also left again before the daily seizures started. They didn't see him loss his words, or not remember how to give kisses or wave bye-bye. These things broke my heart and my parents wouldn't listen or believe me when I was tryed to tell them it was worse.

It came to a head last month. I had them on the phone and told them not to say a word until I was finished and then I would answer questions. This was SSSOOO hard for my Dad. Anyway, I told them that Jake was no longer able to speak, that he had real OCD behavior, that he is considered Globally Delayed. That we were going to ask for genetic testing for some really bad things. My dad kept saying that he didn't see a problem that I was making to much of out everything that he was talking when they were here last sping. All I could say was that they hadn't seen him in 6 months, that he had changed and not all for the better. Their thinking was well, no seizures for 2 weeks, everything must be back to normal.

Listen when she speaks. It sounds like you see Peddy pretty often so she's got one more set of eyes to catch something she may miss. Bounce things off each other. You didn't mention Peddy's dad, if he's in the picture, PLEASE, please include him as well. Also, know that you may not all agree to his treatment, just remember however that you all have his best at heart. It may take one of you longer to come to terms then the other, one person may think that the meds need adjusting and one may not... Give each other space to deal in their own time.

Sorry for rambling on... but, it is so hard a Journey. At least Peddy can talk to you about what the meds are doing to him. Talk to him as well. Let him know you are all on his side. Tell him that grown ups have this too and it's hard on everyone.

I wish you well and even though I've not posted you and Peddy have been in my thoughts and prayers.

Let us know how he's doing - please.

Love and light

Lisa and kids

P.S. You mentioned a med change in him already? It can take as long as 3 months to get a med to a level that it works. Be careful if his neuro is sling shotting him back and forth on meds to fast. Slow and steady increases. It's taken us a year to go through 4 meds with Jake. It's slow and painful to watch, but needed. Just one more thing to think about.