Our weekend.... Atonic Seizures
 

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:confused: 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

Alicia

Yes there is a specific EEG pattern.

I wanna say at The Cleveland Clinic, theres a doc i thought i remembered swho specialised in this. Might be worth a shot in the dar to look them up. They have an awesome epilepsy center up there, as well as a totally comprehensive metabolic center. If they cant figure out whats going, Id be surprised. With us, we knew in literally...ten minutes of meeting our doc. 12 years wrth of missed diagnoses and within ten minutes. He was shocked it had taken so long for anyone to see the bigger picture. They have awesome metabolic geneticists up there too.

Thanks.. Hopefully we are going to have some sort of answers today, or at least better direction. They are doing some more blood work today.

If it continues then we are going to go in for another EEG. Soemthing that scares me to death, not for the same reasons it did a year ago, but I am more afraid of what it WILL show this time. Things have been bad for a while and everything I pick up and read makes LGS sound like what has going on- the EEG would confirm it...

Dear Denae,
I'm so saddened to hear Riley isn't doing well. I had high hopes for her VNS too.
I dread getting a LGS Dx for Aidan myself. We are about to have another VEEG for him, at a different Hospital than last time and this Ped Neuro agrees with me that he should be kept there until every type of possible seizure I think I've seen gets captured. Hopefully, at this point, Riley's Neuro thinks the same way.
Right now Aidan is weaned off all AEDs and actually doing better again at his baseline. The trouble is he's so unpredictably variable and loves to make a liar out of me. When I brag about what he does he'll present as a head dropping zombie. When I get freaked out and worry about regressions and worsening tone he decides to show off. I kid about it being deliberate and say he's a stinker.
At out Neuro appointment last week the Dr and the teaching intern both reminded me that every AED can sometimes paradoxically CAUSE seizures. They also both said that there is often an AED honeymoon, which can end anytime and an AED that once worked can change to one that worsens seizures.
He brought out a VNS for us to look at, but says he wants to try a couple more meds first, after the VEEG, because meds can always be thrown out if they fail, but the VNS is in to stay. Maybe you can find out if there is any chance that Riley might be better off with only VNS adjustments?
Another thing our Neuro said last week was that sometimes total seizure control can not be achieved. Then, you need to strike a balance between acceptable side effects and preserving the baseline level of highest function and awareness. He said there is sometimes a fine line between overall "quality of life" staying medicated, versus having some seizure "down time".
You do need to know how to stop the decline though, if at all possible.
Sometimes I feel certain that Aidan is going down hill. Then, I'll notice he's having such a good day that I doubt myself again. It goes back and forth.
One big improvement for Aidan drug free is his eyes. They have completely stopped crossing (knock on wood) and are staying focussed. I had noticed a gradual worsening of alignment and a continuous dazed look had crept over his eyes, after 6 months on Vigabatrin. Then, of course he was totally out of it on Dilantin, for a month after his GTC hospitalization.
Having a child who is not expected to ever walk or do as well as Riley is difficult. Coming later to the possibility of constant supervision, helmets and wheelchairs must be so difficult too.
Whatever we deal with, it's an adjustment that never ends, isn't it? I share your anguish. I hope Riley is still having good days and making progress, when she does. I love your adorable redhead!
Hugs
Heather

I have been concerned about the little regressions that I have been noticing for the last few months. But like you said with Aiden, there are good days and bad days, on the good days you stop and think, "its not so bad" but on the bad days you are quickly reminded. Rileys progress report had a note attached that said "she is making limited progress this year, her skill vary greatly day to day" That was a reality slap to read..

I ended up giving her diastat after I spoke with her neuro's nurse this morning. She has done better today than she has since the drops started. She only had 3 of them today - and none after the diastat; as opposed to the 10+ she has had ever day since they started.

It is hard when I look back at where Riley was at 3, how "normal" she was then, and then look at her today.

Dr. P told me months ago that Riley is one of the kids that most likely never have total seizure control, so we are looking for that balance between seizure control and quality of life. I am having a tough time accepting the fact that she needs to wear the helmet again. There is no doubt that until we get these thing figured out, and I am leaning toward the Keppra being the aggrivating factor.


Tomorrow is a bright new day and hopefully we will have both the Keppra and Topamax levels back and know what to do.

my thoughts and prayers for riley
 

Denae,

just keep trying I continue to read your posts about Riley
you are marching through a brave battle with your daughter
Robyn

How is Riley doing now?

Kamie

The drops went away after I gave her the Diastat last week. Everything else stayed the same. Friday night we went to the high school football game and forgot her magnet :( we ended up having to give her diastat again Friday night because of her clusters.

Saturday ended up being the BEST day she has had in weeks, if not months. She was happy, playing, laughing and was over all more "alert"

She went an entire 24 hour period seizure free, which is a fisrt for her in a loooong time. It was the most beautiful day even though it was rainy and cold.

Sunday it was back to life as usual, TC's and several partials. Monday afternoon I got a call back from Leigh and as I expected they wanted to increase her Keppra. but she said to LEAVE the Topamax alone, Dr. P didn't want to change more than one thing at a time anymore with her so we would know where the problem was.

So yesterday morning we increased her Keppra by 1/2 a pill in the morning. Last night the drops came back. It could be a coincidence, but I doubt it. Leigh did say we needed to give it a couple of days to see. She got up and had more CP's and went on to school. We will see when she gets home. The kids take a nap at 1, so I plan on calling once they have had time to get settled to see how things have been today.

So.. thats whats been up with us.