I want to be sick... I don't know how much more Riley can take, my mommy heart is breaking and this morning I got more bad news from a dear friend.

Saturday morning Victoria had a band competition about 3 hours away, I was afriad to take Riley that far up into the mountains so the younger kids and I went to Raleigh to the museums. I notices All day that Riley was falling quite a bit and didn't seem to be tripping. When we got home she fell, just dropped to the ground.

I picked her up and noticed that her pull up was wet. I had changed her twice at the meuseum but didn't think anything about it because she still has a fear of public toilets. But we were at home and there is no issue with going at the house, she will go, she is only in the pull up b/c she does dribble a little at times and gets irritated.

I started to get suspicious of seizures so I watched her like a hawk. She fell several more times at home, she is awake/aware as soon as she hits the ground it seems. She is groggy, but not sleeping after, her eyes have the post seizurey look to them.

Home health came out Sunday morning to check her level but the nurse couldn't get a vein, she tried four times and said no more. We followed her to the ER and they got it.

She must have "fallen" at least 15 times from the time she got up until about 10:30 when she had the last one. I was sitting in my room, she had gone to the bathroom and all the sudden I heard her hit the floor. A second after the thud she started crying.

I called Dr.P first thing this morning and am waiting on Leigh to call me back. They should have her levels today too.

I have considered acidosis as a cause. The only thing that makes that not makes sense is that the problems really started when we began to decrease her Topamax, and add Keppra.

She has been on Keppra before and we didn't see seizure increase so I ind it hard to imagine the Keppra causing it either... I don't know...

I remember thinking that the partials she was having one to three or four times a day were unacceptable... I would gladly take that back over this....

(((((Denae)))))

I'm so sorry it's going like this for precious Riley. heartwrenching.

Is she active during the little bit of between time she's getting? or is she just subdued/wiped out?

God love her, I wish I wish I could change this stuff for her and you both!

keep hanging in there, for her sake,
cj

Oh, man. Denae. Ugh. My heart is breaking for you. I wish I had some answers. Maybe it is the mix of keppra and the other med? Or this specific dose of each that she's on now? Ugh.

We're thinking about you guys and hoping you get some relief soon from those nasty seizures. Please give that brave redhead a big hug from Langan and from me.

(((((hugs)))))

(((Hugs))) Wish I had some advice. How soon until lab results are in?

I hope her neuro has them already. I *think* since they were done in the ER that the results were faxed sometime yesterday...

Yesterday she was pretty groggy and icky most of the day, I called my mom to check on her and she said she was ok.. With my mom I have no idea what that means. She did say she looked better than she did yesterday, ANYTHING is better than yesterday.

I am holding my breath and waiting for the neuro to call- Should be anytime now, call back are generally this time of day.

Man, denae.

there was a time with Lauren that I had her admitted and I refused to take her home. I flat out refused to take custody of her until they figured out what in the name of hell was going on in her head, body and soul. Luckily for me, eventually it was on that admission...they did. It was in that admission they found her first mito lab was abnormal. It took alot for me to stand up to the docs and stand my ground...but it was for my daughters well being. I "knew" something was wrong. Is this something you too, could do. If you know in your heart this isnt right...and from the sound of it, riley is having every type of seizure imaginable...this is what I would do in your situation. I'd force them into a wean of ALL her drugs....and have them SLOWLY reintroduce them...one by one...until they can develop a better plan, one where she is a bit better stabilised. She cannot, nor can you...go on like that. Eventually, it will catch up to her. Your better off doing this inpatient, long term, all in one shot. I hope I didnt offend you by coming out and saying all of this after a long abscense...but you cant continue on this path and expect to be successful with her like this The neuro doesnt seem to be listening too well....you need to wake him up and listen. It isnt hard ot do, once you capture their attention and stand firm with your thoughts.

Denae, I'll sit and cry with you though we know it doesn't help any. I just wish your family could have a break.

Matt's first seizure type that got him diagnosed with epilepsy was atonic seizures. He too seemed as if he tripped but he clearly hadn't tripped but he would fall then just get up. Once in a while he'd just fall in an odd direction and once in a while he couldn't speak clearly for some time afterward. He did get hurt at times. Fell down the stairs once. Please remember these have no warning usually so she needs to be even more cautious which was one of the hardest things for me to figure out... how to encourage normalcy and yet not let him do so much for safety reasons. This was from an infant but especially problematic when he began kindergarten at age 4.

Anyway, what is the med they give to children with deteriorating seizure patterns and delays? the name of the condition escapes me. She has all the same seizure types they do. Not sure if her EEG pattern fits but..... I know it isn't what you'd want to hear but if it has a name and a protocol for treatment...maybe it would help Riley?!

I can't imagine what is going on in her sweet body.

When Matt was having such a hard time this year, I was very grateful they admitted him to sort it out. Again, not pleasant, but she needs solid help. You can play with the meds but I think they need to start from square one again and reassess her completely.

my thoughts, filled with my loving concern and prayers for your sweet girl.

Hope someone gives you some hope and comfort and that Riley has a better day each day.

lucinda

Lucinda

I *think* you are talking about Lennox Gastaut (prob, spelled wrong)

I have had that thought in the back of my mind for a while.

She hasn't had an EEG in a while, so I have no idea..

I thought there was a particular "pattern" for that on the eeg.

yes, that was it. brain freeze. hope not but from the pattern it is worth having it investigated as a possibility. At least have an EEG to see if it gives any clues if it has been awhile.

and Denae, thanks for the words about Noah. I think they freaked cuz we had travelled to rural Sri Lanka and were being very cautious. But as to why he had such a high WBC ??? that bothered them a lot too but anyway, he's improving as he does.

hugs again.

lucinda